Mary and Jodie

Bioethics for the People

In this episode, Devan and Tyler discuss the separation surgery of conjoined twins, Mary and Jodie.

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 Tyler.

0:28

So I have a good case for us today.Awesome.I love these case discussions, especially because we tend to pick cases that the other person doesn't know as well.So it's like you're teaching me.That's right.That's the whole that's the whole point, right, is that we're doing some good teaching here.OK.Before I start this one off, I want to say most of the cases that we do in this series are going to be ground breaking cases that probably most people in bioethics at least have heard of.

0:53

This one I think is a little bit more marginal, but I want to include it both because I think it's a really interesting case and you know, it's our podcast and we get to decide which cases we talk about.Yeah, things are interesting if we decide they're interesting.That's right.We are the arbiter of interesting.The case did make headlines.

1:11

It was all over the news in 2000.We were, of course, in 2000.Kids at heart.But the year 2000?In the year 2000.Yeah, I may have been in college, so.

1:26

But we were not bioethicists yet, so it might not have made our radar, but it was really big news.So this case at least was big news at the time, even if it doesn't necessarily always get included in like case books about ground breaking bioethics cases.But but maybe it should.OK, the case is of Mary and Jody.

1:45

Have you heard of them?No, not the case of Mary and Jody.OK, good.So it'll be all new to you.Have you heard of the concept of sacrifice surgeries?Sacrifice surgeries.I don't think that I am familiar with that term.

2:03

It can I guess what it is.Sure.Is it a a surgery that you are undergoing in order to benefit somebody else?Yes.OK, Yep.So, like, I'm donating an organ for somebody.Would that be a sacrifice surgery?It would not under this, it would be more like you donating your heart.

2:24

Oh, my whole heart.You're making the ultimate sacrifice.OK, wait, was there a Will Smith movie about this?Yeah, that 11 pounds, 7 lbs, whatever the weight, whatever the weight of your organs is.I already forgot.No, I mean, I guess that could be one too.

2:40

Normally we would say we would never do this.We don't kill one individual to save the life of another individual, which is not something that we do unless the individuals in question are conjoined.Oh, OK All right.

2:56

I'm seeing the wrinkle now.Yeah, these are very rare cases, but I think that they're they're worthy of note.I think sometimes there's this idea in bioethics that we focus too much on exceptional cases and not enough on the more mundane cases that we actually will encounter in our everyday work.

3:12

And that's true.We do tend to focus on the more salacious because it's just more interesting and more out of the norm.And I think that would be true of this case, except that I think it raises really important philosophical questions about what it means to be a person, what it means to kill.

3:29

These are like really important things that we should have worked out in bioethics, and I don't know that we totally have.So this case kind of presses us to think really deeply about some fundamental questions and we'll get we'll get to those at the all.Right, but I'm with you.OK, I'm going to set the scene so it is April 2000 and a 35 year old woman goes to get a prenatal check up in her home and her home is in Malta.

3:53

Have you heard of Malta?Malta the country.Yeah.Yeah, I've never been there.But yeah, it's like, yeah, Mediterranean.I'm thinking it's beautiful, right?Yeah, it's an island that is owned by the UK but has its own cultural history there and it's very Catholic.

4:08

And so she gets, she goes to her checkup and this is the four month ultrasound.So women who have had children are familiar with this.This is a pretty important ultrasound because you start to see anatomy in a kind of forming in a particular way, and her OBGYN realizes that it looks like she has twins that are conjoined.

4:28

When he sees this, he transfers her to Saint Mary's Hospital in Manchester, England, where he previously practiced.It's where he came from.And he said, right now I'm not equipped to handle this.You need to go somewhere to a better facility that can handle what what's about to happen.So I would imagine that being having conjoined fetuses is like an immediate, you know, high risk pregnancy like you know you want some place that does like maternal fetal medicine, like high level of medical care and attention is necessary when we got conjoined situation right.

4:57

Exactly.OK, Yeah.So that's what he's thinking.Would you venture to guess how rare conjoined twins are?Oh, I mean, we hear about him a lot, but I think it's probably like a a salaciousness bias in the media, right.

5:13

So I would say it's probably really uncommon.One out of 10,000 is my guess.Yeah.It's more like 1 out of 50 or 60,000, OK.Wow.Exceptionally rare, and in doing some research on this case, we still don't exactly know why conjoined twins become conjoined.

5:30

Which is Isn't that mind blowing?Like we have some hypothesis about why this happens, but we don't know for sure.Yeah, that is weird, I thought.I guess my assumption would be that it was some sort of malfunction in like the division process like early in the embryonic stage, but I'd have no idea.

5:47

Yeah, I mean, that makes sense.It's like a fission or a fusion problem.But we don't totally know.And sort of when I was digging into this, it was like, well, we have some theories, but they don't seem to explain all the ways in which conjoined twins become conjoined.For whatever reason, we don't totally understand it.And because it's so incredibly rare, it's really hard to research.

6:05

OK, so we do know.Really rare.There's various theories, Don't know exactly why.We know that most conjoined twins are stillborn, so most don't make it for whatever is going on.It doesn't often end in a viable pregnancy. 75% of conjoined twins just don't make it.

6:24

Even though they're exceptionally rare to happen, they're even it's even more rare for them to be born alive.When they are born alive, they're often female, and the hypothesis there is that female fetuses are just a little bit more hearty.Did you know this?Female fetuses tend to be a little bit more robust, a little heavier in weight, just for whatever reason.

6:42

I had no idea that that was a OK statistic that was known.OK.Oh yeah, everybody knows that, Tyler.I mean, I appreciate that women are stronger, more robust, more, all of those, all of those things.Well, I mean it it.Yeah.So it doesn't, like, translate into other things, but it's just true.

7:00

Of fetus is for some reason, the twins we're going to talk about today are female.Mary and Jody are pseudonyms for these girls.We do this often.It becomes a court case, and we'll talk about why in a second.But in court cases and in bioethics cases, we try to use pseudonyms for, especially for minors who don't have a say, whether their names are released.

7:20

Their names subsequently have been discovered, but I still feel like and I'd be curious how you feel about this, they didn't agree to have their names revealed, and as far as I know, even as adults that's not true.I'm going to stick with Mary and Jodi.Yeah, it makes sense to me.I mean, these kids had, you know, no ability to be involved in the decision to in the public eye.

7:38

So, right.Yeah, full support, Mary and Jodi.Mary and Jodi, most conjoined twins, are joined at the chest and they share at least one organ.OK.Mary and Jodi are actually conjoined at the base of their spine, and they're facing away from one another, if you can kind of picture that.

7:55

Yeah, they share an aorta, A bladder and a circulatory system.OK.Which makes sense, yeah.After a few scans, they realize that Mary is a smaller twin, and it seems like she's not doing as well in utero as Jody.

8:11

OK, and the doctors are pretty scared that these twins are not going to be born alive, that they might imperil the life of their mother.So they actually urge their mother to terminate the pregnancy.This would not be uncommon, both for the sake of her and and because they don't think that the children will do well.

8:31

Rita, their mother, says no.She is Roman Catholic and she thinks abortion of any kind is wrong.She really wants to give the twins a chance.So she says absolutely not going to terminate this pregnancy.I want to see it through.

8:46

I'm going to send you Tyler, what the management plan is from her OBGYN and I just am curious how you feel about this.OK, so let me pull it up.So how how far along in the pregnancy are we still talking?Is this still like the, I don't know, like 20 weeks Ish?

9:03

Yeah, yeah, yeah.So this is a note from the the Doctor.Yeah, this is her OBGYN, OK?So do you want me to read it?OK, I've had many discussions with the parents about their wishes for their children.I have at all times tried to accommodate their wishes within what I believe to be ethical and acceptable guidelines.

9:24

So far so good.As a result of their desire for non intervention, which I think I wish we should flag as a potentially loaded term, I took the unusual step of allowing the twin pregnancy to continue until she went into spontaneous labor at 42 weeks, about 9 1/2 months.

9:42

Normally one considers delivery before that time because of a concern about whether the placenta can adequately nourish both fetuses.Also, as agreed with them, I delivered them by cesarean section at the last possible moment in labor.

9:58

This met their desire that the pregnancy was as non interventionist as possible.OK.All right.How do you feel about that?So if I were to recap, so it sounds like the doctor just disagreeing about the plan to to just allow the pregnancy to continue.

10:18

Obviously when he says things, it looks like saying things.I don't know some of this.The language is a little bit weird, so I took the unusual step of allowing the pregnant, the twin pregnancy, to continue.That's AI don't know.

10:33

I don't feel great about that language and probably what it implies about the conversations that happened.Yeah, like.Like, it's his decision.Yeah, like he is magnanimously allowing this mother to make a decision.So that kind of rubs the wrong way.Waiting to the last possible moment isn't really a medical term.

10:53

I think this is a quote to the media, so maybe he's trying to say things in a way that OK, people understand.Yeah, but still it's kind of centering the doctor in a weird way.Non interventionist is a fun term as well.Yeah.So it's, I mean if I were to recap, it's like they allowed the, the pregnancy continued, they were giving supportive care and as long as possible in order to give the fetuses as much time in utero as possible to develop and give the best possible outcome, right.

11:20

So it's kind of a watchful waiting type of approach.Exactly.We know already that any sort of twins tend to be a little bit smaller.The pregnancy is a little more precarious because of twinning.It's even more so with conjoined twins.I think what he means he took the unfortunate, sort of, like you said, centering himself.

11:38

I took the unusual step of allowing the this to continue.Probably what he should have said was it's very unusual for a parent to choose to continue on the vast majority of cases in which conjoined twins are diagnosed in utero.The parent would probably choose to terminate.I think he's more trying to say, like it's unusual what we decided to do.

11:57

And he just kind of phrased it in a maybe not the best way, but.Maybe a clumsy way?Maybe a slightly clumsy way.That's right.So 42 weeks.So they let this pregnancy go on for a really long time. 42 weeks is is beyond what we would typically it's within the of acceptable care, but they're trying to give these kids a chance.

12:15

Yeah, I mean 42 weeks, that's a late delivery even on in the best of terms, right.Right.I mean, 40 weeks is what you go for.Full term, yeah.And really, like going beyond 40 is precarious for mother and often because the if the fetus gets really big, that can be dangerous to her.

12:33

But of course, because they're conjoined in, because they're so small, that might be what's best to give these children the best shot at life.If they were to induce earlier, they wouldn't be as big.Maybe that would be more precarious for them.This mother is putting herself in jeopardy by allowing this pregnancy to go on as long as it did.

12:49

So they wait till spontaneous labor at 42 weeks and then deliver via cesarean.It's kind of wild to me to think that any woman ever delivered conjoined twins vaginally.But of course we know this is true because there have been conjoined twins historically before Caesarean was invented.

13:04

Yeah, it can happen.I I can't imagine that happening today without some sort of, like emergency situation.Not, not the planned delivery mechanism for conjoined twinning.Right.No.Caesarean makes more sense for most of the ways in which conjoined twins are conjoined.

13:20

OK, the medical team proceeds with the anticipated plan.They deliver Mary and Jody Caesarean section August 8th, 2000.It's pretty clear her on delivery that Mary is not doing as well as Jodi.So it looks like she has an underdeveloped brain and lungs and heart, and that Jodi seems fairly typical of a newborn.

13:39

So there's a discrepancy between their anatomy and like I said, so each of these infants has her own set of organs.But it looks like, and we can see this because they share a circulatory system, that Mary's heart and lungs are only functioning because they're being supported by Jodi's heart and lungs.

13:56

So Jodi's doing a lot of work in her lungs and heart to circulate blood for the both of them.Right.Which may be long term.Prognosis isn't great for viability of both of them, right?That's right.The worry is that this is so taxing for Jodi.

14:12

It's so taxing on her heart and lungs to be supporting another person that they're worried that it'll over tax her and that she could die within six months.And if she dies, Mary dies.Her continuing to support Mary could lead to both of their deaths within and, they're guessing somewhere between three and six months.

14:32

OK.Because the and and if I'm just guessing here the because as they grow and develop the taxation or the need of 1 circulatory system to continue to maintain, the other one is just going to get more and more and more it's going to be more taxing and OK that makes sense.

14:49

What do you do?All right.This is, this is the conundrum and maybe our listeners think, oh, it's really obvious what you do, but I don't know that it is really obvious what you do.The the physician team comes up with three options.Can you potentially guess what those options are?

15:06

So one option would be to, let's say, watch fully, wait again, which is one of my preferred interventions.Just wait and see how things go.Maybe that the prognosis is wrong and you know, Mary starts to catch up and pull her own weight cardiovascularly and they're able to live conjoined and and both be relatively healthy.

15:31

I think another option would be to surgically separate the two and prioritize one of the children over the other one.In that case, they would prioritize Jodi at the sacrifice of Mary.And then I don't know the third option, I don't know what's the third one.

15:48

I guess what you tell me.Those are all wrong.No, no, not quite.Just a little tweak.So one would be let them be, and if they die, they die.We're just gonna not intervene.This is what would happen in a sort of natural environment.

16:05

We just let them be and they will probably both die.But maybe we're wrong.They seem fairly certain.So one is to just do nothing, not nothing, but not try to intervene surgically.You would still try to care for them in other ways.The second choice would be a, this is the quote UN quote sacrifice surgery where you would separate them.

16:25

And it's funny you say prioritize.I I've talked to we have a friend, a mutual friend who has actually participated in some conjoined twin separation surgeries and what he has said is that you it's unethical to try to prioritize one or the other that you try to do your best to separate them in a equal way.

16:44

What's difficult about this is even if you do that because they're not sharing major organs, we just know that Mary won't survive the surgery because of her the under development of her brain and lungs and heart.They just don't think there's any way she could support her own system if she were separated.

17:01

OK.Sacrifice in that we know that Mary dying from this surgery, either immediately in surgery or quickly after would be almost 100%.They just don't think there's any way she could survive this surgery.But the odds of Jodi dying in surgery or soon after are like 5% OK.

17:19

So, so relatively low, right?Relatively low, yeah.The third option, then, would be wait until Mary dies and immediately separate them and hope that Jodi survives that surgery.OK, they they guess.

17:35

And these are all I will say, the more I read stats on this stuff, the more it's like these are pretty.These are guesses.I mean, they're informed, educated guesses.But because conjoined twins are so rare, it's really hard to know exactly what percentages are.But they what they're going to say is something like if if we choose option three, we wait for Mary to die and then do an emergency separation surgery, Jodi's chances of dying in surgery are more like 60%.

18:02

OK, so way more risky to Jodi, but OK, so why is option 3 on the table then?If it's.I don't know.I guess that's the first question that jumps to my mind is by waiting you're increasing the risk to Jodi it must it.

18:21

So waiting must have some sort of other benefit to in order to make it make sense, right?Well.Kind of.Or avoid some sort of harm that we're trying to avoid.Yeah, well, I think the harm is the feeling by some that a separation surgery would be killing Mary, OK?

18:40

And so waiting for her to die naturally, even if it imperils Jodi's life, is the more ethical thing to do if you believe that separating them, which we know would lead to Mary's death, is a form of killing Mary.And this is the controversy.

18:56

Yeah.So then if we think that the separation surgery of option #2, so the the separation now option would be killing Mary, then we would wait until Mary died naturally and then try to save Jody.

19:11

OK, I'm with you.OK, and it also might have to do with just how the parents are feeling about this.Mary and Jodi's parents don't want to separate them at all at all.They say from from their position as strong Catholics that both of the their daughters have a right to life.

19:28

That they would feel with option.The second option, that it would be killing Mary to save Jodi and that that for them is ethically wrong.And they even go so far as to say like this would be against God's will.OK.They also, and I think this gets sort of overlooked, said some things about how difficult it would be to raise a disabled child in Malta, that Malta is a very discriminatory place toward people with disabilities, that they would be judged as having sinned for creating a disabled child.

19:59

So there's also those kinds of worries.And so they're leaning toward option one is just, you know, leave them as they are.This is how God created them.If they die, that is what was meant to happen.The physician team is not happy with this option, right?There's a chance of at least saving Jodi.

20:16

They're not happy to just let them both die because they think that there's something they can do.This happens in the UK, not America.What do you think would the if if this had happened here in the States?What do you think would have been the ethical deliberation about this?Yeah.

20:32

If this would have happened at our hospital, I would assume that I would hope that there would be some a lot of conversation way before the delivery, right.So these options are not suddenly created just because of the delivery, right.These these are conversations that could have, should have been been started as soon as we had the diagnosis of conjoined twins and hopefully working through the various options even before we we had the children born.

21:01

I think would be the first step in Michigan where where I am and you know Texas, California, where wherever else.I think that it's almost ubiquitous, almost 100% that there are mechanisms by which a physician who is being asked to do something that they believe to be medically inappropriate or medically futile, which is the term we try to stray away from a little bit, but that they are able to say no if they're being asked to do something that they believe to be violating their their oaths or good medicine.

21:32

The opposite is sometimes true.Depending on this, the policies and state laws that we can compel treatment against the wishes of people who are refusing it.Those circumstances are much more narrow and really kind of tightly controlled about when we can compel treatment against somebody's wishes and those generally have to be really kind of slam dunk cases, right.

21:54

It has to be clearly beneficial.The parents refusal or surrogate decision maker, whoever that may be, decision has to be clearly kind of outside the bounds of what what what is reasonable, but I don't know that this case rises to that level.I don't think it does.

22:09

Yeah.So my gut would say and and I don't have a comparable case in the States to to show you, but sometimes we call this like the zone of parental discretion.So there's a lot parents are able to say yes or no to most things.And like you said, there's these two extremes 1.

22:24

Extreme is futility or non beneficial treatment in which the parent is requesting some sort of treatment that we just don't think there's any physiological way it would work.That's one outlier and the other outlier is the parents are neglecting to provide some sort of life saving, low risk intervention.

22:43

The classic case of this is a blood transfusion.If a parent is refusing a blood transfusion that would be life saving for a child.We can often overrule them because the risk of a of a blood transfusion is very minimal.It's it doesn't create a lot of harm or a lot of risk and the benefit is extremely high.

23:01

If you need a blood transfusion, it's a life saving, it's often a life saving blood transfusion.So those are the kind of outlier cases where we'd say no, you can't make this decision it it's like abuse or neglect, it might rise to that level to say we can't do it.I don't.

23:16

I don't know that this case is quite so clear.If in America, especially in 2000, we would have just let the parents decide, even if that meant both children died.Yeah, I I.Think so, especially at that time.So there are there have been cases in the last several years of it usually has to go through the judicial process.

23:35

So judicial system at some point but judges have compelled treatment of like for example chemotherapy in certain types of cancer.So there's always this push to say where does this zone of parental discretion, where are the limits to it.

23:50

Blood transfusion like you said is a classic example because not only is it really low risk and really high benefit, but it's a one time intervention.We can do it.Kid either gets, kid gets better, they move on with their lives and live a happy normal life.It causes pause when the outcome is going to be long term care, long term like repeated interventions over and over and over again or the child is going to have long term impairments on you know, their life function and health and stuff like that.

24:21

So my gut reaction would be to be similar to yours that I think that in 2000 given this set of circumstances letting the parents make that decision even though the healthcare providers are really against it.I think that that's kind of how it would play out.

24:37

I wonder if maybe it would.And I'm going to suspend judgment on that for a second, just to say I think that's descriptively what would have happened.I'm not saying that's the right or wrong decision, but but of course this didn't happen America, This happened in England.And as you may know, in general, I think in England they're much more interventionist.

24:54

They're much quicker to go to court and overrule parents.And we saw this with like the Charlie Guard case, which we may talk about in another episode.But I also don't think the Charlie Guard case would have happened the way it did in America.Yeah, there's sort of a more interventionist, more legal interventions within a lot of these cases.

25:11

So the medical team brings us to court, 'cause they say we can't, we can't just let this happen.Which of the other?Two options does.Is the medical team pushing for?They're push pushing.For the sacrifice surgery.Just the sacrifice surgery, the number 2.The we go in, we, we have the surgery and OK, got it.

25:29

Yeah, yeah.So the.Family wants option #1, which is no intervention.The medical team wants option #2.Nobody seems to be advocating for 33 Okay.They bring it to court.A UK court overrules the parents refusal to permit the separation of the girls now, so there's a bunch of judges that give reasons why they are allowing that this refusal of care couldn't be overridden by the medical team.

25:53

So I want to send you this too, just 'cause I think some of these are like incredible and pretty contrived.I want to be gentle just because I think it it's so hard to make good analogies to conjoined twins, because what else is like being conjoined?Maybe mother and baby in utero 'cause there's conjoined us there.

26:10

But even that's a little different.So this, there's just such unusual cases.So the judges, I think, are grasping for some good analogies such that we can draw upon the law to make a convincing argument.Yeah, which is.The way that a lot of, especially in novel cases that that's what, you know, judicial reasoning or jurisprudence, I mean that's what we do is we say this case is more like that one that we decided in this way.

26:34

So let's try to find you know, is it enough similar that we can follow the same type of process reasoning by analogy?Or so I want to.Throughout, there's like a few different analogies that different judges use.And actually it was also appealed.It went to the high Lords and they also permitted the surgery.

26:51

But here's so I'm going to give you a smattering.The first was one of the justices Justice Ward argued Jodi was entitled to self-defense against her sister.Oh, interesting.OK.How do you feel about that?So they're talking about the.Interests of Jodi the Twin versus the versus their their twins almost like like Mary is AI mean parasite.

27:13

Seems like a two hearts of a word but but a person who is drawing the resources or consuming the resources that rightfully belong to Jodi?She's a a net drag on her right to life, basically, yeah.And I don't know that I've heard in this case the word parasite, but actually physicians used to use the term parasitic twin to describe a twin like Mary.

27:36

But we, we do not use that term anymore.It's like really degrading.Yeah, yeah.It gave me the, it gave me the shudders when I said it.So yeah, let's go back and strike that from, OK.OK, so the first claim is self-defense. self-defense?This person is like draining my life energy.

27:51

She's going to kill me.I have to be able to defend myself against her.This would be sort of like a justified killing.Interesting.So, So what?That does.And so I'll just kind of think through these out loud as we go through them.But that is saying that that's conceding that it's, it's it would be killing Mary, but it's saying that it's a justifiable killing because you know if it's a proportional reaction to the threat to life against Jodi, OK, OK.

28:17

So that's one.Kind of argument.Here's one on the opposite end of the spectrum.Justice Johnson argues that Jodi is serving as a kind of life support system for Mary, which should be able to be withdrawn to allow Mary to die.Interesting.

28:32

So almost that Jodi's body, her circulatory system that's supporting is a medical intervention that just falls under the same analogies of a ventilator or dialysis or you know, an external cardiac supports bypass system.

28:48

Yeah, but that's what's interesting about that one is that who is turning, who is being turned off and.Right.So if Jodi was actually the the life support system, she's not being turned off.Right.Right.It's the it's the the other party in this that's being terminated anyway.

29:05

Interesting.OK, that one to me is like a.Real stretch analogy.Like I get why it is.It is the case that, like Jodi is helping to support the life system of her sister.But to call her an artificial life support when they are both human beings, Yeah, Just feels really icky to me.

29:21

Yeah, external.Like, yeah, I mean, there's a lot of other words besides artificial that seem to make more sense, but right, but you.Can see why you do you want to make that argument?Because we generally do agree that it is OK to turn off an artificial life support system to allow somebody to die naturally.

29:38

So if you, you know, you can see why you'd want to make that argument.But I think ultimately it's a dehumanizing kind of argument, OK?He also argues separation is in the best interest of both girls because Mary would be better off dead.That can join to Jodi.Oh man.

29:53

That's a that's an uphill battle.That's an uphill argument.I mean, I I there are situations where I I have seen where where the dying process is horrific and being dead is preferable to that.But I come up from a very a particular set of, you know, backgrounds and biases and somebody who has the opinion that all life is sacred, that being dead is better than being alive is.

30:21

I mean it's almost like a it's a non starter, right?Like what?It's bad.Especially if we have somebody who is disabled and as this same judge conceded, depended upon the other person to be to have any life, right?OK.

30:37

Doesn't sit well, OK?Justice Walker argues that the surgery, the sacrifice surgery, actually grants Mary bodily integrity as a human being, albeit in death.OK.Implying in some way that bodily integrity and dignity is not present now.

30:54

It can only be awarded to her through the surgery.All right.OK.Being a singlet, you have bodily integrity, but if you are conjoined, you cannot.And it's just as a reminder there are adult conjoined twins.There are people who live a long life in a conjoined state.

31:11

How insulting to them that they don't.So the claim is they don't have bodily integrity.Yeah, but.And not only so bodily.So integrity is an interesting word.Like, I mean independence, autonomy, like, I mean there there's a lot of different ways that you could kind of frame the idea of the benefit of being separated, I think, without using dignity language, but that's what.

31:34

He chose, though.OK, oh, here.So I take back the the parasite comment.Lord Justice Ward has this quote.Though Mary has a right to life, she has little right to be alive.She is alive because and only because, to put it bluntly but nonetheless accurately, she sucks the lifeblood of Jodi, and her parasitic living will soon cause Jodi to cease living.

32:01

I don't like that one either.No, not.Not great.Wait, what?What?Is Yeah.How do you understand the difference between a right to life but not a right to live?She has a right.To life, but not but little right to be alive, little right to.Be alive.

32:17

All right.Maybe I'm just not smart enough to understand the difference that's being drawn there.How do you understand that?I think he's just.He's drawing on the sort of, like, parasite notion that so she has a right to life, just as Jodi has a right to life.But her living is so conditioned on Jodi, and her living is so conditioned on, like Jodi eventually, like, overtaxing her body.

32:38

OK, yeah.But it's it's a weird this is not how normal people would talk.Yeah.Yeah.Yeah, OK.OK.So those are kind of a smattering.Do you like any of those is no or is there a better analogy?What analogy would you want to use, Tyler, I don't know.I mean what's interesting about this kind of this, like you said, the smattering of justifications is that they all seem to have the conclusion in mind and they're trying to trying to kind of after the fact or post talk, make a justification about it, but like how they're trying to justify a conclusion that they've already made.

33:12

I think the analogy of, I don't know, maybe being pregnant would be more useful than obviously more useful than the parasite analogy or the life support system or the self-defense.I yeah, I think there's a couple of other benefits to comparing it to being pregnant because you have mutual duties and I don't know, I'm.

33:33

I'm drawing a blank.How about, I mean what are what are some better ones?I don't know that there are.Better ones I.And I think it's because it's such, it's so unique.It's just there's not anything quite like being dependent so physically on another person.I mean, even a mother child relationship has a slight difference there.

33:51

Yeah.Yeah.There's the possibility of independent life in which you know both have the opportunity to flourish.But this situation is 1 is the flourishing of both is kind of mutually exclusive because of the dependence of of one on the other.So but this isn't even the a case where it's like this the twins are in like even more they don't share vital organs.

34:14

I mean obviously bladder and circulatory system, but it's not like they they're conjoined to the point that they have one heart, one lungs, right.So you're not having to.Choose who gets what organ, Which is right.Yeah, would be more maybe intolerable to think about, but they're not even having to do that.

34:30

So it's it's such a unique situation.I mean, I think like if you were going to do like a Catholic bioethics take on this and you didn't agree with direct abortion, you're talking about indirect abortion as the kind of analogy it would be that.So sometimes abortion is tolerated when the there's an intervention using the rule of double effect that you're trying to save a mother's life and in so doing, the fetus is terminated.

34:54

But that wasn't the intent of, say, the operation.So if a woman has cancer in her uterus and you're trying to remove it and as a consequence the fetus dies, that can still be tolerated within Catholic bioethics because the goal was not to terminate.But I don't know that that works in this case.You really are you're not intending married to die, but you just you just know that that has to.

35:13

The only way for Jody to live is to be separated, and to be separated is to lead to Mary's death.And so I'm not sure that that kind of indirectness applies here.Yeah, I'm not sure it.Answers the question, yeah, that we have right.So in reviewing.This case, there was a lot of bioethics commentary at the time, but I think George Annis, do you know him?

35:31

I know of.Yeah.Yeah, we.I know of him, yeah.He's a very.Famous legal and lioethicist.So, you know, just like you there.Material differences, but go on.So he has this great quote, or I think it's a great quote.He he writes in the case of Mary and Jodi, it seems to have been decided not on the basis of law, which most of the judges found to be of little help.

35:53

So, Right.So their analogies are really strange, but on an intuitive judgment that the state of being a conjoined twin is a disease, and that separation is the indicated treatment, at least if such treatment affords one of the twins a chance to live.I feel like that's kind of what you were saying.

36:09

Yeah.Is that how you feel?Yeah.Yeah.I think George is saying the same thing as me.Yeah.Yeah.No.Which draws raises some other interesting questions about like how we define disease, which is something that we having some interesting conversations with some of my colleagues about disease.

36:27

Like how how are we defining disease because we can't accurately or at least satisfactorily define disease.What are we treating?Like what what, what interventions make sense?Or, you know, if disease is inequitably distributed within our society, how do we grapple with that if we don't agree with what a disease is?

36:47

So do you think that conjointedness is a disease?I do not you.Don't, OK.Not on the face.Of it, OK.I mean, I think it would be and and because I'm writing about this case in some similar cases, I think that would be inadequate.I think it you might compare it to something more like a disability, because the ways in which conjoined twins move through the world, like the world is not built for conjoined edness.

37:11

It's built for singlets.And so you would face some real social obstacles, but that doesn't necessarily mean that, like, your life is poor for being conjoined.It just happens that in this case of conjoinment, there is a problem, a medical problem for sure, or a health problem.So there's lots of disabilities that might have additional comorbidities that are associated with the particular disability, but it's not the disability itself that's the disease.

37:35

It's those other processes that are going on.So I do want to make that separation, so to speak.Yeah.So, so, Mary.'S fundamental problem is not that she's conjoined, it's that she has an inadequate aort or bladder, whatever the consequences of the conjointedness are right, I think so.

37:51

That's.What I would want to say okay various bioethicists, like I said, weigh in.Most of them argue something like better to intervene and save one of the girls than to passively let them both die.That's the kind of general consensus from what I can see from the time.

38:08

And there are a few who think, oh, they should have intervened.But when they argue that, they argue mostly like it was the parents prerogative to make that decision and they shouldn't have overruled the parents.So those are the kinds of arguments happening on the other side.There is some strong voices in the Catholic Church who are coming to the court arguing against what is happening on slightly different grounds.

38:30

So the Archbishop of Westminster, Cormac Murphy O'Connor, which is just the most sort of perfect name, say, say.His name again?Cormac.Murphy O'Connor sounds Irish.Maybe, Yeah.No.So he writes a statement to the UK judges arguing against separation surgery.

38:49

And here are his five moral considerations.I just think we might go a little over our typical time, but I think they're interesting.So, one, We have a duty not to aim to cause an innocent person's death.OK thou.Shalt not kill.Yep, especially.An innocent person?

39:05

Yep.And there's nothing more innocent than a newborn child.Yeah, two.Bodily integrity shouldn't be violated without benefit to the individual.So he's actually arguing opposite of the judges, that it would be a violation of Mary's bodily integrity to separate her from Jodi.OK, three, the good end of saving Jodi cannot be justified by killing Mary, so the ends don't justify the means. 4 The burdens of surgery were extraordinary and therefore did not carry any moral obligation.

39:34

OK, so separation surgeries are extraordinary and we are therefore not obligated to perform them.And five, the parents are acting toward what they think is owed to their children and should not be overridden.So we we should give deference.So kind of a.Kind of parents rights type.

39:51

In situations of ambiguity or Gray area, then we should defer to the person who bears the burden, which is the parents right, whose obligation it is to make that decision.OK, so those are his. 5 Arguments and And there are other Catholic bioethicists who agree with him and some who disagree with him.

40:10

Just to say, I think that those are potentially more interesting arguments than like parasite artificial life support.Yeah, I was just.Going to say that, I mean if we're if we're laying like the the complexity and nuance and probably the the usefulness of those analogies or those moral principles against the ones that the judges came up with, like I think that the the Archbishop makes a.

40:31

Better case, Yeah, the Archbishop.Of Westminster is maybe a little bit better able to make those claims.So the other argument.That I see a bunch of bioethicists making with and and even Catholic ones is really interesting.That support the idea that conjoinment itself is bad.Conjoinment itself impedes the girls, is flourishing, and the goodness that comes from life.

40:50

Things like bodily distinctiveness, like marriage, being conjoined, will severely diminish the goodness of their lives because they can't do things like get married, it seems kind of.Reductionistic.Incredibly.And because lots of conjoined twins have gotten married, well, conjoined Chang and Eng Bunker.

41:12

Do you know the the these are the famous twins.It's like like.From the 1800s, Right.Like one of the first ones.Yeah.So they.They're really famous because they came from Siam to America to be part of a traveling freak show.Like another topic that we should totally do an episode on.But they had, they both got married and they had a combined 21 children.

41:32

What?They did not.Impede their being conjoined did not impede their flourishing it seems really at all.I mean that's that's supposing.That having 21 children is an element of flourishing, which I think that we could probably have a difference of opinions on.Great point.Yeah.

41:48

Actually side note that those twins are actually where the, the term Siamese twins comes from, right.Yeah.And I think in.In 2000, you'll see a lot of the that phrase Siamese twins, but just to say it's pretty anachronistic and we don't use it anymore, right?Yeah.Yeah.For good reason.

42:04

Yeah, I think so.Like they sort of set the stage to calling all conjoined twins Siamese, which is very weird.But physicians, I'll see physicians using the term.And I just, I'm shocked by that.Conjoined is the better term.Yep, we find that in these discussions, there's these assumptions about conjoined twins.

42:20

There are two people always that they both want to live.This makes sense.They would prefer to be separated and that the real only medical challenge is like how best to separate them.So there's this instinctive like it's bad to be conjoined.We make this argument on behalf of children.

42:35

They would want, if they could tell us in their future adult selves what they would want, they would definitely want to be separated.These are empirical questions, I think, that don't bear out.So there's been some kind of investigation of these claims and and you find and again conjoined twins are really rare.

42:52

And to find narratives from conjoined twins is pretty rare too.But all of the modern narratives of conjoined twins almost exclusively will say it is better that we're conjoined.We would not want to be separated.We think our lives are good, which, like, really flies in the face of this assumption by most bioethicists that separation is the best thing possible.

43:11

You know it.Reminds me of a of children who are born kind of intersect or sex or that the gut reaction is we have to pick one and we have to do the surgery and we have to assign a gender and we have to you know with the assault underlying assumption that to be not abnormal is the wrong word.

43:28

But to be out of the the standard cookie cutter black and white is so bad that even if we're introducing all these other harms and traumas and all these other issues by assigning sex, that that's ultimately the good thing, right?Which is an assumption that demands justification that doesn't exist.

43:46

I think agreed these.Cases are actually quite similar for just the reason you're naming is that there's this assumption that there is like one kind of life that is better.And it is true that we've built a whole system that supports that idea because it's really hard to be non binary to have a child who you don't immediately gender.

44:04

What do you read on the birth certificate?You know, there's all sorts of like, legal pressures to to make these choices.We know that of conjoined twins.How do you think about a driver's license?Where do they go to college?Like, do you admit one or, you know, there's all these interesting questions that the world is not ready for certain kinds of bodies.

44:20

What if one?Wants to get married and the other one doesn't want to get married or right?What does that?Look like one wants.To drink alcohol and the other doesn't want to drink alcohol, but you know the systems are such that you know you can not drink and still get a little buzz from your from your sibling potentially.Right.Yeah.Yeah.

44:36

So there's, I mean both like physiological, like how how does that work, but then also social, like how does it work in the social world?I think we are moving in a different way.There's not an urgency in some of these cases.Maybe we can decide later.This case is more urgent though because of the situation of impairment of of one life and then both lives.

44:55

So there is more urgency to this question just to kind of reveal the ending.They separate them.Mary immediately dies and Jody, as far as they know, is still alive.Interesting.So Can you imagine like being a family on the wall and maybe not even fly on the wall, but a bedside nurse, a surgical scrub nurse who is Wheeling these conjoined children away from this mother who knows that you're taking them away to to for one of them to die right against their wishes?

45:23

I think it'd be obviously a much different situation if the parents were on board and they said if God allows her Mary to live after the separation and you know that's something that will accept and if not then we'll accept that as well.But then just saying no, don't do that, don't, don't do that thing that's going to end up with the the death of my child.

45:42

It's terrible for the parents.But also I I think of the the supporting members of the the healthcare team that I bet, I bet there's some some secondary long term trauma that were associated with that situation as well, yes.I I'm sure in the time that that was incredibly difficult to do.

46:00

If it's any consolation, I don't think that like what ended up happening justifies necessarily the decision that was made.But I think the parents did say they were glad that decision was taken out of their hands and they're glad that they were separated because they love and and you can.What else would you say?I mean you have this child that you love you're not going to say gosh I wish she had just died.

46:19

Of course not.You know by taking the decision away from them.I don't want to say, like, that's better for them ultimately, but maybe that's of some consolation.Yeah, it.Probably.I mean, what it does is it allows them to kind of offload that guilt if somebody else made that decision and they were not not the actor but also kind of the victims in this as well that the the healthcare system and the judicial system said that this is going to happen.

46:43

And they advocated as strongly as they can.I've seen that in some cases where we take, you know, there's a medical decision usually in the context of like your futility or inappropriate treatment or code status, for example, Where if we say that this decision is medically incoherent and we're not going to do this or we're going to do XY and Z and the parents or the surrogate decision makers that that decision is taken out of their hands, then there is some relief I think.

47:09

So I think that's the case.I think for me, sort of as I indicated at the beginning, there are like big questions that this case raises for me.The first one is, what does it mean to be an individual?Because again, I think there's this assumption that you cannot be an an individual with your own bodily integrity if you're conjoined, and we love individualism in America.

47:28

Can you be an individual if you're conjoined?What would that mean?Does it depend on how conjoined you are?Right.Yeah.If you're just a little bit conjoined versus if you share vital organs like the the degree of conjoined edness, I guess, yeah.

47:45

And I would think most, most conjoined twins, you ask, we'll say that they are individuals.They have different preferences, that they, you know, like different things, that they have their own personalities.In fact, it's actually really important to a lot of conjoined twins to emphasize how they really do have different personalities, probably because people assume that they, because they have to do everything together, that they must like the same things.

48:07

Maybe we overemphasize our own bodliness in our individuality.What makes a life good?There's this real, overriding presumption that conjointedness would make your life bad, that it would prevent your flourishing.I don't know that that bears out in reality.But, you know, what is it about?Like?Is it just that I can go to the bathroom without somebody being there all the time?

48:25

Like, is that what makes my life good, or is that, like, a bare minimum?I have little children right now, so that almost never happens.It's so.Basically, it's like having a parasite on your hip all the time, children.Right, children.Yep.What counts as killing?This is a huge question.

48:41

Is it?Is it killing?And if it is killing, is it a justified killing?But I think that these, these physicians didn't want to admit that this was killing.Yeah.Maybe that has to do with the discomfort, I think, the appropriate common discomfort of of trying to parse through the differences of the types of killing, right.

49:00

So we think of homicide as being this broad category.And then there's acceptable types of homicide.And then there's bad homicide, right?There's murder, premeditated murder.But there's also, like involuntary manslaughter, for example, has a different moral weight and a different punishment attached to it.

49:16

And then there's even more acceptable types of killing, like killing in the context of a military conflict or self-defense, like we talked about earlier.And.It matters to parse it, yes.These parsings.

49:31

Matter.Because killing someone in self-defense is not the same thing as thinking about it and planning it and executing it.These carry different moral weights.But what if it's not killing at all?What if you know, what if it is more like life support?And that's the better analogy.And so we we are pretty clear in bioethics that withdrawing medical interventions that are not working or that we agree are too burdensome.

49:52

That's not killing.That's allowing somebody to unnaturally by removing the intervention that was keeping them artificially alive.And it's important to us to to separate that from killing.Yeah, and and.Not just morally, like, criminally speaking, right?Right, there's.Criminal.

50:08

Consequences.Not just, you know, moral consequences, But if.You think genuinely like this Is that the case of Mary and Jody, and these sacrifice surgeries are a case of killing.You then have to justify why that's OK and even the next step of, like, how it's OK to override parents to make that decision.

50:28

So this really presses up against the zone of parental discretion, I think.Yeah 'cause this is not a.A question of whether or not my 17 year old should or does have access to contraception for example, like this is, this is a isn't just like a lifestyle question or a question of differences of religious commitments or political persuasions or whatever, any other category other than life and death, right.

50:52

So the we are literally talking about the the death of a child.That doesn't have to happen today, right.And I think that's kind of what you're talking about earlier is the urgency of these questions.There may be a day where it has to happen, but that day is not today and we have some time for deliberation and thought and maybe maybe negotiation or compromise.

51:10

It doesn't seem like the right terminology, but at least some dialogue and some conversation about how we we weigh these these issues of individuality and killing and bodily autonomy.And yeah, these are they're.Huge questions.

51:25

And I I love this case because, I mean, it's a very sad case, but it's just such a case to prompt us to think a little bit deeper about what we mean by certain terms.And I'm not sure all bioethics cases do that.Some of them sort of set precedent like this is how we're going to behave in the future.Now that we have the precedent.

51:41

This case, I think just prompts us to go how sometimes we really sidestep some very fundamental questions in bioethics that this case is going to force us to reconcile.And I think we.Sidestep not because it makes sense to sidestep.We sidestep because we probably don't have the tools or the sophistication to really work through those in a way that is satisfactory to people or we just.

52:03

Don't agree, right?So we can often sidestep these questions because they don't matter as much in most cases.But in this case, if you really think that this is killing and that it's OK to be conjoined and that this is just sort of nature taking its course, man, that's a real different orientation than than what the medical team took.

52:19

And I'm not saying I don't.I think it was the wrong decision.Gosh, I can't imagine any other decision really.But Wolf, it's a tough one.Well, that's a.That's a great case for this series on profoundly important cases in bioethics, so thanks, Ellie.

52:35

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.

52:51

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 Darien Goldenstall.You can find more of her work at dariengoldenstall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.

53:11

We love to connect with our listeners.All of our episodes can be found wherever you listen to podcasts.Please like, subscribe and share and connect on social media.