Terri Schiavo

Tyler (the leading expert on the Schiavo case) and Devan discuss the life and death of Terri Schiavo.

Transcript

0:03 

Come to another episode of Bioethics for the People.I'm joined by my Co host Doctor Devin Stahl, who according to her student reviews should be cloned and teach all of the bioethics.And he's Tyler Gibb, who, according to his students, is best described as the goat of bioethics. 

0:28 

All right.Tyler, it's your turn today.What do you have for us?All right, all right.I got a case that I think that I've read more about this case than anybody has read about any case in the history of bioethics.That is quite the the feat, yeah, the claim. 

0:45 

Why have you read so much about this case?Right, so this case the the Terri Schiavo case is what it's come to me known as is actually the the central topic of my dissertation.So it was a labor of love I guess. 

1:02 

So I've read at that time.I'm sure the other things have been published, but at the time that I finished writing my dissertation, I was confident that I had read everything written about Terri Schiavo books, blogs, miniseries, like everything. 

1:18 

Like I had consumed everything about.Wow.And this.So this would have been eight years ago. 810 years ago, yeah.So yeah, I finished it in 2015.And so that was when, yeah, I even dusted off.I don't know if you do this very often, but I actually dusted off my my actually bound published dissertation. 

1:37 

What?I never had my dissertation bound.That is beautiful.I yeah, really?Yeah.I I had it bound and I got a bound copy for a couple of advisors and gave him to him as gifts.I'm sure that they are sitting on their shelves and never being read either. 

1:54 

I hope you signed them with love.Oh, I don't.I think I did sign them.You better.Have anyway.Well, I did publish my dissertation, so I guess I sort of got it bound.Yeah.Eventually, yeah, I I I pulled the classic grad school grad student move where I thought, I'm gonna publish this, this is brilliant. 

2:11 

And then it sat on my shelf for a year and a half and I picked it up and I was like, maybe it's not as brilliant as it felt at the.Time.Well, today is your redemption.Today is the day where all that labor is worth it.That's right, I it's gonna make it all worth it. 

2:28 

All of those years of toil.OK so Terry Schiavo, this case fascinates me obviously because it is really complicated and has a a cast of characters involved that makes it more complicated. 

2:44 

That I think is just mostly unknown.I think some of the people who play a role in this case are well known outside of this case.So but we'll we'll we'll get to that.So Terri Schiavo, what, how, what do you know about Terri Schiavo?Not to put you on the spot, but putting you on the spot. 

3:01 

A little bit only because it comes up as one of those right to die cases.So typically, I'll teach it in conjunction with a couple other cases, but we just do really bare bones.So she's a one of those 3 pretty young white women, which I think is, I say was sort of just, but also in seriousness, like, the public cares a lot about a particular kind of person when these cases make headlines, because she's certainly not the first person that's ever happened to. 

3:29 

So why was she the one?And I'm sure you have lots of explanations for that, but she gets seriously hurt.Her husband wants to take her off life support, her parents object.And so it creates this huge what isn't necessarily uncommon. 

3:44 

I'm sure you've seen cases like this in the hospital.There's a intera family fight about what should be done.What's unique about this is it gets politicized in a really outrageous way.And so politicians are involved, the media is involved, and it's this fight about what ought to be done for this woman and. 

4:02 

What the burden of proof for convincing us that she would or wouldn't have wanted to live in this way in a what we then might have called a vegetative state?And maybe we have better words for now.I wish we did have better words.We just abbreviate.It makes it go away. 

4:17 

We just don't say the words.OK, yeah, So Terry Schiavo was born in 1963 in Pennsylvania, actually.And so most of this case takes place in Florida.And after a couple of things to note about her as we kind of set the stage is that when she was younger she had a, she struggled with her weight and her body image and was bullied and picked on like through middle school and high school and was quite heavy at the end of high school moving into kind of her college years, late teenage years. 

4:52 

She went on a couple of really extreme diets and lost a ton of weight and got a lot of social you know, positive feedback started going out with boys and started getting more socially outgoing and kind of changed her life in a in a meaningful way for the benefit, for the for the good. 

5:14 

And she was able.I mean she went to Community College and met this a guy named Michael, Mike Schiavo, Michael Schiavo.And they started dating and everyone seemed to like them.And you know, it's kind of a a really happy time in their lives.At some, at a point maybe late 1980s, nineteen 90 ish, they moved down to Florida where her parents had retired to. 

5:37 

And they wanted to be in the Tampa area so they could be close to her retired parents while they were continuing school and stuff like that.So newlyweds moved to be closer to her retired parents in Florida.OK, all right.So she continued to have. 

5:53 

And some of this is speculation.And so I kind of have to go out and say that at the beginning is that there are vastly different accounts depending on whose perspective you're taking here.But at some point during the late 1980s like 8889, Michael and Terry Schivo, she became interested in having children and she started to go to a fertility clinic. 

6:18 

And because she was continuing to have a really kind of extreme diets, weight loss, protocol regimen that she was going through, she was having fertility issues.OK, so crash diets tend to not produce healthy outcomes is just what I know, right? 

6:36 

Yeah, there are other ways to accomplish the same goal, but she was having trouble having regular periods and stuff like that, and so she was having a hard time getting getting pregnant.She was allegedly, apparently reportedly drinking massive amounts of iced tea and so like 5 gallons a day or something like that, like like an outrageous amount of iced tea in order to continue to maintain her weight and stuff like that. 

7:06 

So through the process of that, it seems in retrospect that she was, her malnutrition was an issue as as well as her electrolytes were kind of all out of whack because of this massive amount of iced tea that she was drinking.There were reports in the in the media that she was anorexic or that she had an eating disorder, but that may or may not be true. 

7:29 

It's hard to really tell, but she was definitely very concerned about her weight and also the diet was was kind of wacky as well.So all of that is and back story. 01 more caveat before we get too far into this.Sorry.Caveat upon caveat, there's a little bit of disagreement between the family members and people who are close to her about actually what we call her so. 

7:52 

Like her name?Her name?Yeah, so.So Terry is short for Teresa and apparent some reports say that Terry was just almost like a like a diminutive nickname that her family would use like really close intimate friends. 

8:10 

And the family has bristled a little bit that everyone is calling calls her Terry now because it was, it feels too familiar for people who didn't know her and so they would prefer her name her to be referred to as Teresa, which makes sense.But everyone else calls her Terry. 

8:27 

So that's just the terminology we use.And also her last name Shivo is how it's commonly pronounced in the media and and and amongst people who study or read about this.But apparently the pronunciation, the Italian pronunciation of her last name is something closer to like Schiavo or something like something more like that. 

8:46 

Not even close.So we really butchered it like the media totally butchered it.Yeah, butchered her first and last name.Which I mean, if this is, if this is your family member who you care about, who's in vulnerable situation, like at least let's get her name right, But so here we are. 

9:02 

Well, So what are you going to say?Are you going to say, I'll say, I'll say Terry Schiavo, just because, I mean it's kind of the way that everyone does it, but but it's.Wrong.And and you should and our listeners know, OK, yeah.So at some time during the night in February of 1990, so I'm going to give a lot of dates and so I'll I'll try to keep these in sequential order because it it, it's important later. 

9:27 

So in February of 1990, where were, what were you doing in February of 1990?Oh, so I had just turned 5.Yeah.So I don't know.I don't know. 

9:42 

I don't know either.I was 9.So February of 1990, Michael Schiavo was working a late shift and came home.His wife was already in bed, Terry was already in bed, and at some point during the night, according to his account, he hears A thump and he understands that to her, her having collapsed in the hallway. 

10:04 

So the story is that he comes to bed late, she gets up to use the bathroom or something and passes out in their hallway.And so he gets up and tries to revive her, is unsuccessful, calls 911 and starts doing chest compressions there in the hallway. 

10:21 

Oh, so her heart stopped.So she right, stopped breathing.No, no heart rate.And after the fact it seems like this is related to her electrolyte issues and and the other things going on.No suspicion at this time of any type of foul play or malicious intent or anything like that. 

10:40 

From from Michael, over the course of the next 20 minutes to 30 minutes, the EMS folks show up, they end up shocking her heart.I think they they reportedly shocked her seven different times.So 7 rounds of very, very aggressive CPR even in the terms of your CPR is often aggressive chest compressions. 

11:02 

Eventually they're able to get her heart restarted and she is able to maintain her heart rate.So return of spontaneous circulation.However, during that interim when the heart isn't beating, the blood isn't flowing, the oxygen isn't circulating, she suffers massive irrecoverable A neurological injury. 

11:27 

So brain damage, because of a lack of oxygen, she gets transferred to the hospital and then eventually she stabilizes and is kind of in a an equilibrium where she's not getting worse but she's definitely not getting better.And in a condition that later becomes known as the persistent vegetative state or permanent vegetative state, the terminology again is a little squishy. 

11:51 

So what that means, basically is that everything above her brain stem has been significantly damaged.And so she will have so people it.Lots of individuals in persistent vegetative states will have spontaneous respiration. 

12:08 

They'll have reflexes.Really basic brain functions that maintain their life will maintain their, you know, blood pressure and core temperature and stuff like that, respond to pain in some ways, but not consistently, but definitely no interaction. 

12:24 

She's not opening her eyes.She's not appreciating anything going on around.Her No consciousness.No consciousness.So some of the old literature refers to this type of condition as wakefulness without awareness.It's funny you say that just because I was thinking sometimes people will want to say instead of PBS because vegetative sounds a little dehumanizing. 

12:44 

Unresponsive wakefulness syndrome or something along those lines which actually sounds similar to maybe an older terminology.And the idea being, you still have sleep, wake cycles, but there's no consciousness at all, right?No consciousness and no perception of what's going on around you, right? 

13:01 

And so when somebody walks in the room, there's no response, right?If someone pops a balloon, there's no response, right?There's no interactivity with the outside world.What the individual is experiencing is unknown.Like we don't.We don't know what what it's like to be in that condition because by definition, nobody ever recovers from that definite that condition. 

13:21 

It's a it's a permanent or persistent situation based upon the level of injury and the location of the injury.Injury from lack of oxygen.So yeah, so not the same.Sometimes people recover from coma.This is not that, right?And usually it's the case that people, when they have significant brain injuries that they will be in a coma for a period of time. 

13:44 

But being in a coma, the way that we commonly understand it is really a transitory state where people will either get better and they'll, quote, UN quote, progress into a persistent vegetative state or maybe a minimally conscious state, or they'll recover or they will deteriorate and they'll pass away, they'll die. 

14:03 

And so it's unusual to be in that that kind of coma state without any type of movement.And so that's where she was initially, but then progressed, quote UN quote, progressed into a persistent vegetative state or PVS.So at this time, Michael. 

14:18 

So the main characters at this point are Michael, her husband and her parents Bob and Mary.Terry's maiden name is Schindler and so Bob and Mary Schindler are on and Michael Schivo are the the main people in her life right now at this time they are very united. 

14:35 

They are very concerned about their daughter.Michael actually gives up his apartment which was further away from the rehab center where she was transferred to moves in with his in laws in order to be closer to provide good care.All indication is that there's a really a cohesive unit really trying hard for her to get better. 

14:56 

That's what you want.Yeah, exactly.And they are pushing for a very aggressive treatments.They are exploring experimental therapies.At one point she was even taken to University of California, San Francisco, which has an excellent state-of-the-art Medical Center. 

15:16 

There to do procedure call.It was some sort of stimulator they put inside of her brain to see if it would like re reanimate Some of the electrical stuff.A thalamic thalamic stimulator was implanted experimentally that ended up not working, and so during this time up until about 1992 ish. 

15:36 

So for several years the family was united and very aggressively trying to get her better.At one point, Terry's parents and Michael joined together to sue her primary care doctor and her obstetrician, claiming that they, those doctors either knew or should have known her malnutrition, her other issues going on that precipitated this and they didn't treat her for it. 

16:01 

So it's kind of a little bit of a stretchy malpractice claim, but but there was a claim there and actually it went forward and one of the doctors settled for his policy limits, which was about $250,000.And then the other doctor ended up settling after some other litigation back and forth for close to let's see. 

16:25 

So the second malpractice case, Michael received about $300,000 as compensation and for for that as of the Exeter of or the guardian of Terry Schiavo and then about $750,000. 

16:41 

So 3/4 of $1,000,000 was put into a trust to take specifically for the use of her for medical complications and treatment ongoing.Right.Which might have gone through pretty quickly.I mean, the state she's in is a very expensive sort of condition to have, and so my guess is that money didn't pay for even everything. 

17:02 

I don't know.Yeah, not, not a lot, right.And so that came about in about 1993, so kind of the end of 92, beginning of 93 and in February actually on Valentine's Day of 1993.At their multiple accounts of of this interaction, Bob Schindler and Michael Schiavo had an explosive disagreement about who and how this money was being used. 

17:35 

And so they both accused each other of promises being made and assurances and and commitments that have been broken.And prior to this, Michael Schiavo had been appointed through the normal process as the guardian of Terry, and so he was empowered, without opposition by the Schindler's, to make all, any and all medical and financial decisions on her behalf. 

17:59 

Once that kind of blew up, though, that relationship was irretrievably fractured.They it was high animosity from that point on, So 1993 on.So money and my guess is it's just stressful right? 

18:15 

It's special living with your in laws but also well just maybe in general.I don't know.I've never done that but but having to care for somebody who's so in such a grave position and and my guess is hope for her recovery is dwindling as years go on. 

18:32 

So Michael has come to the conclusion that further aggressive treatment is not going to help that that this is the state that she's in.And so he, it seems like from the literature that he is more resigned to this is going to be a long term chronic care type of situation instead of we're going to get her the best treatment, she's going to recover and we're going to move on with our lives. 

18:54 

So this is 3 years in.So three years in.This isn't, this isn't going to end, all right, but the parents are holding out hope.Yeah.Neurological injuries, as you know, are really difficult to prognosticate, meaning that it's really hard to see an injury, particularly a recent injury, and have a really good idea of what that is going to look like long term. 

19:18 

And the longer it goes, the better information we have about what the prognosis is going to be.And definitely after three years aggressive treatments tried and failed, it's pretty clear that this is kind of her status quo.All right, Michael obviously moves out with from the Schindler's and then later that summer Bob and Mary Schindler write a letter to Michael and this is what it says. 

19:42 

Let me just read.So it's it's it's very long.But here's the important point.So the letter said on a long term basis, we would like you to consider giving Terry back to us so we can give her the love and care she deserves logistically and realistically. 

19:59 

You have a life ahead of you.Give this some thought.Are you ready to dedicate the rest of your life to Terry?We are, so let us know your feelings.So, so basically inviting him to recuse himself as a decision maker and let the family take over and make decisions. 

20:16 

Yeah, 'cause he's a young guy, he's in his 20s, he has his whole.I mean, it's sort of, that's sort of a gracious thing that they're doing.It is, yeah.The rest of the letter wasn't quite as gracious.OK that was kind of the the kind part So after that and and Michael it seems he perceived that as a veiled threat. 

20:37 

It did not.It was not received well and after that point the relationship continued to be really tough.I I specifically they they started getting lawyers involved and so the family wanted Michael to not be the guardian anymore. 

20:55 

They wanted to make decisions because they they had a suspicion.They had an inkling that he was going to make decisions that would limit aggressive treatment and they wanted more aggressive treatment and so they wanted to remove him and then jump back and continue the aggressive treatment. 

21:13 

He Michael felt like he had made a commitment to Terry and that he knew what she wanted and it was the case that she wouldn't want to live like this and so he was confident and comfortable making end of life decisions with that understanding the family Bob and Mary and all. 

21:31 

There's a brother and a sister actually involved in the the Schindler's as well and the brother has gone on to have quite a important reputation and role in end of life issues.His name's Bobby Schindler, he's created a foundation in Terry's name and stuff subsequently, but they all believe that #1 Michael was a suspicious or unreliable decision maker and #2 Terry never would have said that because of the way that she was raised. 

21:59 

She was raised as a a devout Roman Catholic and based upon the the Roman Catholic Church's teachings about end of life and sanctity of life and and all of those things, they believe that Terry number one didn't believe that and #2 probably never said that either. 

22:15 

OK, so so Michael's saying she told me she would never want to live like this.They're saying there's no way, given our family beliefs around this, Catholics don't.Well, they might have thought that it's not a rule that Roman Catholics think that all people in PBS have to stay in that state permanently. 

22:31 

But OK, we'll leave that for another podcast, right?Yeah, we can talk about that.OK, So what?What happened?So the interesting point in the case right now are two questions.Number one, does a surrogate have the authority to make an end of life decision for their loved one? 

22:47 

And #2 what's the quality of evidence necessary in order to make that decision?Yeah.Hadn't we settled this by 1990?Yes, we had.So the first question gets got answered in the 1970s.OK, so a case about a woman named Karen Ann Quinlan, Is that ringing a bell? 

23:09 

It is the the other, that's the this is the trifecta of of young white women who who helped us figure out end of life law.Exactly right.So we got three of them.We got Terry Schiavo or Teresa Schiavo, depending on how you want to pronounce it.We have Karen Ann Quinlan, the 1970s and then in the early mid 80s, Ish. 

23:31 

We have another case.Nancy Cruzan was in the 80s and 90s and then Terry Schiavo was later.So the first case, Karen Quinlan was, like you said, a young woman who also ended up in a persistent vegetative state after actually, I think it was a car accident in Missouri. 

23:50 

Is that where we're at?No, this was in New Jersey.As you say, you're thinking of the next case, yeah, Cruzan was in Missouri, so Karen Ann Quinlan is in a an accident, maybe involving drugs and alcohol, maybe not.Not relevant, but she ends up in a persistent vegetative state, similar to Terri Schiavo, but she is ventilator dependent. 

24:15 

OK, so so her location and severity of her injuries made it so that she wasn't able to breathe spontaneously on her own and she was hooked up to a ventilator.After a number of years, the family decided, you know, she really wouldn't want to be hooked up to a machine like this and then requested the the doctors to stop that. 

24:36 

And this was kind of the first, the first time that the family requested a withdrawal of life sustaining treatment and the families request was resisted by the hospital.So the hospital said, wait a second, is that something that we can really do? 

24:52 

Yeah.Is that killing, right?To remove this, knowing that she would die, Is that a form of killing?So they're nervous, understandably, because this had really been the case before.Yeah, exactly.And recently in I think it was in Connecticut. 

25:07 

So a a neighboring state or a close by state in that area, there had been a lawsuit, a really public lawsuit about a doctor being sued or a hospital being sued.That kind of put a chill into the the environment, right.So everyone's a little bit more cautious than maybe they were. 

25:23 

Normally that goes up to the the New Jersey Supreme Court and the hospital actually wasn't saying no, we're not going to do this.They were saying we need someone else to look at this to make sure we're doing the right thing before we.Do it.Get legal involved, get legal right.We need some legal advice. 

25:40 

So after some back and forth, and because the doctors and the family weren't necessarily in conflict about this decision, just who and how the decision was being made, eventually it was removed, the ventilator was was stopped and removed, and Karen Quinlan ended up living for about 10 more years. 

25:58 

Yeah, they didn't realize, and because this is early ventilator practice, right, that even if she wasn't spontaneously breathing initially, the vent being hooked up for so long, when they withdrew it, she did start spontaneously breathing at that point. 

26:14 

They and they didn't really think that that would be a possibility.Now we know.Now we know, and the family was actually very happy because the family didn't want her to die necessarily, but they wanted her to be more comfortable.And so the family's goals were achieved, the hospital was satisfied, and she ended up living a fairly stable life and persistent vegetative state PBS for almost 10 more years before she died of pneumonia, which is one of the primary ways in which people with these types of injuries will pass away. 

26:46 

But the Quinlan case established the idea that surrogates can make withdrawal withholding decisions on behalf of somebody else.So the first.So the first question in the in the Schiavo case was answered by Quinlan that #1 Michael Schiavo does have the authority to make this end of life decision for somebody else. 

27:06 

To free her from the ventilator.But she's not on a ventilator, right?Terry's not.Yeah, that's an interesting point.So what else would you relieve her from?So Terri Schiavo was the the medical intervention that was keeping her alive was artificial nutrition and dehydration. 

27:22 

So she had a feeding tube.Can you remove the feeding tube?That's an interesting question.Is a ventilator the same as a feeding tube?Are they both medical interventions?Are they not?Are they different in some ways?Is there some reason why a surrogate could make the decision for a ventilator but not the feeding tube? 

27:42 

Those, those are the questions that we're, we're struggling with early in the Schiavo case.So the second question as how, how good of evidence is necessary in order for the surrogate to do that?Does it have to be written down?Does it have to be notarized?Does it have to be witnessed?All of those questions about the quality of the evidence? 

28:00 

And that was answered in the Nancy Cruzan case.So Nancy Cruzan in the 1980s was in a car accident and ended up in a persistent vegetative state, and her family asked that she be removed from the ventilator to be allowed to die. 

28:18 

The difference in that case or the the the new wrinkle in that case was that the state got involved.Missouri is traditionally a much more conservative, politically conservative state than New Jersey.The attorney general got involved and said no, we're not going to allow this because it's basically hearsay. 

28:38 

Like there's nothing written down.We don't really know that this is what Nancy would have wanted.Because we're expecting.So we let surrogates make those decisions, but we let them make those decisions as if they were acting like the patient.So, so the idea being that we need some sort of evidence that the patient would have wanted this, not that it's just what the surrogate wants. 

28:57 

And so they're saying there's a burden of proof.Then you have to convince us that the patient really wouldn't have wanted this treatment, right?And so I I misspoke.So in the Cruzan case, it was a feeding tube as well.And so Quinlan was about a ventilator, Cruzan is about a feeding tube, Shire was about a feeding tube. 

29:16 

So in Cruzan, the judge, it went all the way up to the US Supreme Court, so all the way to the top.And they issued a state, an order.And they said that the state can require that the family or the surrogate they have, they have to provide clear and convincing evidence of the patient's wishes. 

29:36 

Yeah, that's a high bar.It is a high bar.And it's also wasn't clarified exactly what is clear and convincing.A lot of Supreme Court cases get all the way to the top orders.Decisions are are issued and then there's still a lot of questions afterwards like they don't we actually apply this. 

29:54 

Right, right.They're just saying what the ruling is and then states have to then actually apply the ruling and so like make a form.And I remember this because we went to school in Missouri and advanced directives have a special box for feeding tubes, right.So in a lot of states feeding tubes get counted as any other life sustaining treatment. 

30:14 

But in Missouri and a couple other places, you actually have to specifically say and a feeding tube because it some people think it's slightly different than other end of life treatments.Exactly.And eventually the family in Cruzan were able to provide enough information that the state felt like it was clear and convincing evidence of Cruzan's wishes, of Nancy's wishes and it was removed and she passed away. 

30:37 

Whether or not a feeding tube is a medical intervention.And so the the, the ruling that came out of the the idea, the legal norm or legal principle that comes out of Quinlan and Cruzan is that #1 surrogates can make decisions if they have clear and convincing evidence and also that medical interventions can be refused. 

31:01 

And so that that becomes an interesting question because whether or not so it's pretty clear that a ventilator is a medical intervention, like you said, it's less clear that feeding tube is a medical intervention.But in the state of Florida in 1990, when Shiva was happening, they had legislatively or by statute defined artificial nutrition, dehydration as a medical intervention. 

31:24 

Well, that seems to settle it then, right?So and then everything went smoothly after that.Yes, no issues.End of story.All right, that was a quick one.It's probably worth mentioning, right?Like Quinlan and Cruzan also introduced the ideas of advanced directives, so one way to have clear and convincing evidence is you yourself. 

31:43 

Write it down.So if all of this totally freaks you out, you don't think you'd want to live, or you would want to live in a persistent vegetative state, you should write that down.Either way, right?I wouldn't.Or I would.You should write that down in your state's legal form and hand it to your doctor and ethics committees, right. 

31:59 

So the other thing is that the Supreme Court is, was it the court that said you should have some sort of mechanism to handle this in house and stop bringing it before judges And so the thus the invention of ethics committees.Yeah.In hospitals.Yep.Exactly.All of that stuff kind of percolates out of Quinlan, Cruzan and then eventually Schiavo as well. 

32:18 

So.Right.No, there.That did not answer all of the questions.So this case continues and continues.And what is really, I think frustrating and inspiring is the dedication of Bob and Mary and also their children, Bobby. 

32:38 

And there's a daughter who's who's involved a little bit as well, their absolute dedication to what they believe.Terry wanted and what was in her best interest, and eventually there are 17 different court hearings about different questions in this case, and the and the Schindler's lose almost every single one of them. 

33:02 

But they continue to bring up these cases.And at one point they were filing petitions to get Michael removed as a surrogate because he had.They accused him of abuse, they accused him of causing the injury.In the beginning. 

33:19 

They accused him of, well, he actually did begin a romantic relationship with somebody else.And so they said, oh, he's moved on from Terry Now we are the, the, the people who are best able to speak on on her behalf.And so at every one of those junctures, they would file a motion to the judge as, OK, now this is the reason why Michael should be removed. 

33:42 

And now this is the reason why Michael should be removed.And every time that that happens, the court system because of due process, because of the the way in which we try to be fair in the way that our society deals with disputes, the judge is obligated to say, OK, we're going to pause everything that's going to go on and we're going to investigate this claim. 

34:01 

Right.Because if if Michael gets his way, then Terry will die and that's irreversible.So you have to pause that every time they file a claim and that's that's hard for both parties, right?So Michael wants, if he really genuinely thinks she wouldn't want this, then seeing her in this state prolonged because her family won't like let him do what he thinks is right is also probably really hard on him. 

34:24 

Yeah, absolutely.And it's hard on the caregivers, the people who take care of, who get to take care of her every single day.And so Michael at this point has decided she would not, would not want to live this way.I'm the decision maker that is a medical intervention that I can refuse. 

34:41 

I'm going to refuse that.And then the the Bob and Mary and their representatives would file motions in order to stop that.And also the the judge whose lap this landed on.His name is Judge Greer in Florida. 

34:56 

And he really was really inspiring, I think, especially from someone from a a lawyer's perspective.I rarely ever hear that.I know, right?He this this man, I I don't know much about him because after all of this publicity he's really kind of. 

35:14 

I'm actually not even sure that he's still alive.I, I, I I hope he is and and he's well.But he is very, very consistent in his application of Florida law and he's at least all the published writings and stuff that that have come during the case and afterwards. 

35:32 

Just I think that he actually personally disagreed with Michael Schiavo.I think that he, because of his religious background, believed that nutrition hydration was essential and that the the stopping of it was morally questionable at least. 

35:50 

But he was able to put that aside and make rulings based upon the law.And he was consistent.And over the course of what turned into about 15 years of litigation, he was he was not overruled a single time on any point of law. 

36:07 

And so he was really consistent and good about that.And over 1993 ish is when this all kind of started bubbling up.And then in 1998 is when Michael actually got through all of the the initial litigation maneuverings and asked Judge Greer to approve the removal of the the artificial nutrition and hydration with the expectation that she would die shortly after that. 

36:35 

That sparked off obviously that then it becomes an emergency right and then petitions are being filed and and other people are getting involved like 199819992000 and there are bench trials and all of these different allegations and back and forth.It's as the the stack of legal documents is enormous that was. 

36:57 

Generally, like in this case, I love it.So many legal documents, so many legal documents, and we're not even to the good part yet.Oh.Jeez, because I remember this because when you said, we said what were you doing in 1990 and I'm like, I'm five, but I remember this on the news.So this went on for a really long time. 

37:14 

Yeah, so it didn't end in did so.Spoiler alert Terry Schiavo died in 2005.That is such a long time, such a long time to be in this you know this back and forth conflict with these you know people your in laws basically over the question of whether or not this this woman should live or die. 

37:37 

In March of 2001, it got to the point where Judge Greer had gone through all of the the mechanisms, legal mechanisms, and then ordered that the feeding tube be removed.And so in in April, after some more back and forth, he the feeding tube was removed. 

37:58 

That sparked off obviously another round of intense legal maneuverings, petitions all the way up to the Supreme Court.Judge Greer was asked you know motions to recuse himself all kinds of different stuff.And then at at some point they stopped making claims in state court or at the same time they were making claims or asking for relief by the federal court system. 

38:25 

And so that kind of put a pause on everything and and one of the federal court judges said, well with all of these new hearings, all of these new issues, new questions, new motions, I'm going to put an injunction and require that the the nursing home at this time put reinsert the feeding tube in order for us to work through this. 

38:44 

Those poor nurses.Oh yes.I can just imagine like what stress this is on the healthcare team too.Yeah.At this time the claims against Michael escalated as well.I mean now there are claims of abuse, there are claims of financial misappropriation really. 

39:04 

Like not just like we disagree with him, it's like he is now a bad person doing bad things and these have to be investigated as well.And so this continues until, I think the next big point is 2003. 

39:22 

So in 2003, October of 2003.So this is like 18 months later, right, Still going back and forth and she still is consistently being maintained.So Terri Schiavo is very, very stable.That's amazing throughout all this time, which speaks I think to the excellent nursing care that she got. 

39:43 

And so in October of 2003, the federal court dismissed basically one of the last claims that the Schindler's had about jurisdiction and about other things.The governor at the time, do you know the governor in 2003 of Florida? 

40:01 

I do.That would be Jeb Bush, right?Jeb Bush, right?Everyone knows that, right?Yeah, the little brother of the sitting president of the United States.So.Jeb Bush gets involved in October of 2003.So the the federal government is involved and at that point the interest by outside parties exploded. 

40:23 

So in 2003 there was it's kind of the beginning of what has come to be known as like culture wars or these really big social political issues that.Are generating a massive amount of public interest. 

40:42 

There's a guy named Randall Terry who organizes.It's the leader of a group called Operation Rescue which is primarily a pro-life, anti abortion activist group network that is very large throughout the country.They would organize civil disobedience they against or abortion providers they would block. 

41:04 

Access.And so a lot of the laws that we have now about abortion providers who protesters can't like block the doors, they have to be off the sidewalk.And all of those rules were generated because of not exclusively, but because of Randall Terry's organization doing those things and then getting sued for it and making these laws. 

41:22 

OK.So in October.Terry Randall's group gets involved.Another appeal by the Schindler's gets refused and then in mid-october 2003, Terry Schiavo's feeding tube gets removed again.Wow, so it is like media mayhem at this point, right? 

41:41 

So.Media, they're they're protesting outside of the hospital.It's all over the news, Jeb's.Getting involved.Jesse Jackson comes down and has a press conference in front.And yeah, so, you know, civil rights activist and it's at this point from kind of a biopolitical like social commentary perspective that Terry Schiavo really becomes less important than the idea of who Terry Schiavo is becomes important. 

42:11 

So disability rights groups start getting involved.Randall Terry's group of that primarily looks at anti abortion action is now clasping on to Terry Schiavo's quote fight for life and and appropriating that for their own good. 

42:27 

And it what matters to Terry my Co, the Schindler's really becomes kind of a secondary issue to all of these other groups and activists who latch on to the case and use it for their own benefit.One thing that I found in my research, and I don't know if this is published someplace else, but the the there's one person we can track this back to and it's gonna surprise you. 

42:53 

I think so.Oh please.This is like a bioethics, so that people explain this.Yeah.So in Florida at the at that time in night in 2001, 2002, 2003, there was a drive time radio host. 

43:10 

Who was kind of a a middling.The host wasn't super popular, wasn't unpopular, was in the Tampa Bay area in a couple of other markets, wasn't widely syndicated.But he was contacted by somebody associated or connected with this issue, and he became passionate about fighting for Terry, his name. 

43:33 

Was Glenn Beck.Oh, I knew it.Oh, I did.I've never heard that before.Yeah, so Glenn Beck was a drive time radio host in Florida got aware of this and started talking about not only this, but all of kind of this, this political issues and that really sparked his popularity. 

43:52 

And so people in that area had started tuning in, not just for his drivetime radio banter, but also because he would have kind of these hot takes about politically charged issues.Terry Schiavo was one that he consistently hammered on as he became more popular.In 2002, 2003 his syndication expanded and then in 2003, end of 2003, he went nationwide. 

44:16 

And was being broadcast you know coast to coast got a huge contract from headline news and one thing that he was consistent in was advocating on behalf of Terry's parents.So really hammering this issue and took it from kind of a local regional issue that may or may not be interesting to a lot of people nationwide and he started talking about Terry Schiavo and the right to life and what these. 

44:44 

The opponents or Michael Schiavo's folks, people who are supporting him, how they were undermining all of these other like core values of America, kind of like what Glenn Beck did at that time.So is this the first time?I've never thought about this?Because I think of like pro-life organizations are often we are used to them advocating for certain things at the legislative level today that have a lot to do with end of life cases, whereas I think maybe the public thinks of them as more like beginning of life sort of abortion. 

45:15 

Is this really the first time that those like kind of anti abortion groups are like moving into the area of end of life for people like Terri Schiavo?You think this is like kind of where it starts?I think so and and and kind of the the the group of people involved would be Glenn Beck being the the the spokesperson for so the advocate the mouthpiece for this. 

45:37 

Randall Terry, whose organization really kind of got The Who had the experience of of organizing and mobilizing people around these socially hot button issues.And then Bob, Bob and Mary Schindler's consistent advocation for this point.And so let pro-life, anti abortion folks got involved. 

45:55 

Disability rights folks got involved.Bodily autonomy, pro-choice folks got involved.I mentioned earlier Jesse Jackson was involved because it was portrayed to him as.The the government taking over the rights of parents and so a lot of really awkward bedfellows in this. 

46:15 

So Jesse Jackson is advocating on behalf of the Schindler's.The Schindler's Yeah, super interesting.There's a picture that I found of Bob and Mary Schindler, Jesse Jackson and Terry Randall Terry all on like the stage together. 

46:33 

And after that point, I think when Jesse Jackson and his folks, people who work with his team, got there and saw the parties, the the players that they kind of.Backed off a little bit, like she was sending it to the bushes a little bit.Exactly.Yeah.A little bit like, wait a second. 

46:49 

This isn't exactly how it was pitched to me.Yeah, interesting.Unsurprisingly, there was another injunction issued and Terry's feeding tube was reinserted again.And so this is now the second time that court ordered removal of the feeding tube.During this time, Jeb Bush is not backing down and he calls a special session of the Florida legislature and. 

47:13 

Kind of Rams through a law called Terry's Law into Florida.It's always best to make laws for particular people.Yes, specifically and this again, I mean this is like an entire part of my dissertation is looking at the legislation because it's really unusual for legislative tools to be used to benefit one person. 

47:32 

It has.I mean, one of the principles of legislation is it has to be applicable to the more than a group of people, at least at least more than one, yeah.And so this law being crafted in a way that doesn't only apply to Terry, but the set of circumstances in which it applies are so narrow that it only applies to Terry is really interesting. 

47:57 

And you have to be 29 years old at this particular time and in this county.And so all of these caveats.Eventually that law was deemed to be unconstitutional because it was so narrow.But that.Because there was a law, it delayed the entire process again, right. 

48:20 

So that law eventually becomes deemed unconstitutional.Lots of back and forth about that.It goes up to the Supreme Court because, you know, if there's a challenge against state laws, the the court of last resort is the Supreme Court. 

48:35 

And so the Supreme Court said.No that's unconstitutional.Smacks it down.There was action among Republican conservative members of the the US legislation.So the US Congress gets involved. 

48:51 

They start drafting.They have hearings about this all about this one case and the just reams and reams and reams of decisions and motions and and stuff back and forth and the Schindler's and Michael Schiavo like you mentioned earlier the. 

49:08 

The money from the malpractice claim was what was kind of fueling this until about 1998, two thousand, and particularly when Terry Randall as kind of the poster boy for all of the other advocate groups getting involved, then the coffers are basically unlimited. 

49:27 

There are there's so much money being important to this, there's no limit to the number of motions and lawsuits and and claims that can be filed back and forth.All right, Fast forward spring of 2005. 

49:43 

OK, so spring of 2005.The Supreme Court has weighed in twice now.The federal law never, never was put into the books.It was passed and then found to be unconstitutional.The Florida State law was found to be unconstitutional. 

50:01 

The 11th Circuit found that.Judge Greer had not had not violated any of his rules or or obligations and so eventually every single legal Ave. was closed off and in 2005 in March of 2005 the IT goes gets remanded back to Judge Greer in Pinellas County, Florida, this local probate court judge and he says again. 

50:31 

The feeding tube should be removed because Michael's the appropriate decision maker.The decision is appropriate and there's clear and convincing evidence.So it kind of meets all those standards, the same standards that were in place and which he had met almost 8-9 years previously.So it gets removed and then basically everybody is just on death watch, basically just waiting for her. 

50:54 

She's getting again, excellent healthcare.Nursing care Around the clock in this nursing home, of course, because of the media sensation that that this had all created.There were protests and vigils outside the hospital.There were armed security details transferring the families into and out of for visiting hours. 

51:15 

Glenn Beck actually put his his nationwide TV show on hiatus or on sabbatical or whatever, and started broadcasting from a conference room across the.The street from the nursing home, it would. 

51:31 

I mean, it was bananas.That's so sad.I mean, ultimately so sad for this family.Regardless of like sort of how you think this should have gone, this is not how it should have ended.No.Eventually, after almost two weeks, she does pass away. 

51:49 

She dies from, you know, the typical ways people die from not having a sufficient nutrition and hydration and.She died in March of 2005.So that's 15 years almost, you know, to the month of when she first had her injury. 

52:09 

Yeah.Wow, that is wild.I don't think I really fully appreciated how long that went on and how involved.I didn't realize it went to the Supreme Court twice.I did know about, like Terry's Law.I remember that just cause I've it's so like outrageous man. 

52:26 

Yeah, that is has do you think there's ever been a single case like this that has created such a legal and media sensation?I I don't.I think it I think it is kind of the pinnacle of public interest in a highly controversial kind of end of life bioethics case. 

52:46 

The the only other ones that I think and these are more recent examples and so maybe there's some bias there, but there's one in.The UK about a little boy named Charlie Guard recently, that was really kind of a media media storm.Jihai Mcmath is one that we're going to talk about in a different And then also Jack Vorkian before this. 

53:09 

Yeah, yeah.And that's more of a course the doctor than the patient.But yeah, he becomes such a sensation.But and and legislatively has to also get worked out if what he's doing is legal or not.But but this seems I mean and in Charlie Guard you're right was also a immediate sensation so was Johnny Macbeth but like the the amount of like legal maneuvering seems pretty extraordinary in shivo and and the longevity of it. 

53:35 

Yeah, the the duration of this case is just it it it's shocking really that this is able to continue.But yeah, so at the what the leg in Tyler, what's the legacy?Yeah.The legacy is that it's. 

53:52 

It's really complicated, right?Even though these decisions, these issues had been settled before Michael Schivo and the Schindler's were in conflict, it's it was able to persist and it was able to continue through the legislative process, through the judicial process, through the media. 

54:12 

And it it just speaks in my mind and this is kind of, you know.A little bit of a spoiler alert because I know everyone's going to run out and buy my dissertation and and read it now.Yeah, yeah, you can get on Proquest.I might be able to upload APDF someplace, I don't know. 

54:28 

Oh, we'll, we'll put it on the website.No, no, we're not.It's that at that in 2003 when Randall Terry, who I put a lot of blame on in my in my research, it becomes not about Terry anymore. 

54:44 

And I think that's what's different is that.Jehi Mcmath, Charlie Guard, some of the other kind of well known named cases that we talked about in Bioethics.At the end of the day, they're mostly still about the person and they have broader implications. 

55:01 

But Terry became almost an afterthought by the end of her life and it's really sad in my mind that the family was not able to come to some sort of.Mutually agreeable conclusion well before it became out of their control and because once it gets into like this, like social, you know, social justice, public policy, are you pro-life? 

55:30 

Are you pro-choice type of debates?Then Terry, is is not the most important person in the conversation anymore.Yeah, that's a sad legacy.I mean, I think it's not, it's it's interesting how it how it became so popularized. 

55:47 

But these are things that happen all the time.I mean, I'll say I've been a part of many clinical ethics cases where the person who has the authority to make the decision makes a decision other family members don't like and we have a care conference about it and we try to get everyone on the same page.And sometimes we can and sometimes we can't and we just do the thing that the surrogate, the authorized surrogate tells us to do and it it doesn't, it's not a 15 year battle. 

56:13 

It might be a 15 day battle or a 15 month battle, but it's all internal to the hospital.It rarely gets outside of that.So it's it's just interesting that this case got so outside of kind of the mechanism and in early 2000s it's not like everyone had a like super functional Ethics Committee or even ethics consultation. 

56:33 

But just to say, I think I don't know if it would turn out differently today, but I see it all the time.So this isn't, it's not an unusual case in and of itself.It's just unusual, the way it became so expansive.Yeah.So just kind of wrapping up, I I want to read to you what I think. 

56:50 

So before we get there, one other issue is that Bob Schindler and Michael Schiavo were some of the most stubborn.Is that the word?They they were committed to their positions and they they would not be moved from those. 

57:07 

And those two personalities I think drove this initially quite a bit as well.And I don't, I don't know who is right.I mean I don't know that Terri Schiavo and Michael Schiavo had those conversations.I don't know what her upbringing was.So at the end of the day, there's still some open questions.Like I said earlier, Bobby Bobby Schindler, who is Terri Schiavo's brother, I don't know if he's older or younger. 

57:29 

I think younger he has founded a created a foundation and continues to be very active in end of life.Type of conversations and advocacy and support.So Michael Schiavo buried Terri Schiavo after her death. 

57:46 

And the the headstone is really interesting.It says Schiavo Teresa Marie Beloved wife, No mention of daughter, no mention of anything else.Born December 3rd, 1963.Departed this Earth February 25th, 1990. 

58:07 

At Peace, March 31st, 2005, I kept my promise at the very bottom.Yeah.So depending on what side you you fall on, that could be either really, really touching, really a final tribute, or it could be the last middle finger to the in laws. 

58:25 

Yeah, it kind of feels like that last one.She didn't die in 1990.I, just like by any definition of death, was not dead.Right, so, he said.Maybe socially, but.Departed this Earth February 25th, 1990.What does that mean? 

58:41 

That's.I don't know.That seems like aggressive, like a like a passive aggressive slight at her parents.That's that's too bad.And maybe not so passive, maybe it seems like maybe like a an aggressive, aggressive, yeah.And it's unusual and this just speaks to the the, the animosity, right, That I think was still really visceral. 

59:02 

I mean it's, I think it's unusual.I've never seen a gravestone like that.Yeah, to kind of have your last, you know, thumb in your eye to somebody being the gravestone you put on.Yikes.So anyway, so that's a quick and dirty Terry Teresa Marie Schiavo. 

59:21 

Thanks for listening to this episode of Bioethics for the People.We can't do this podcast by ourselves.We've tried, and it's not pretty.Our team includes our research interns Michaela Kim, Madison Foley and Macy Hutto.Special thanks to Helen Webster for social media and production support. 

59:37 

Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two and husband to one.Podcast art was created by Darian Goldenstall.You can find more of her work at dariangoldenstall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com. 

59:57 

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