The Ashley Treatment

Bioethics for the People

In this episode, Devan and Tyler discuss the case of Ashley X. Ashley’s parents and medical team proposed a treatment plan to attenuate Ashley’s growth that drew both praise and criticism from bioethicists.

Links to Sources:

Kristi Kirschner et al. (2009) “The Curious Case of Ashley X,” PM&R.

Ashley’s Parent’s Blog: http://www.pillowangel.org/

News reports:

• https://www.cnn.com/2007/HEALTH/01/11/ashley.ethicist/index.html

• https://www.nytimes.com/2007/01/26/opinion/26singer.html

• https://www.theguardian.com/society/2012/mar/16/ashley-treatment-ericas-story

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, I'm excited for our case today.Yeah, this is a I'm, I'm excited.This is a good one that I don't know much about.So I'm expecting some insights, some some brilliant stuff.OK, so lower your expectations.

0:44

So I was thinking about this case yesterday because I actually teach on this case a lot.And I think I teach on it a lot because for me, this case has everything.And I as soon as I thought of it that way, I I was reminded of the Do you ever watch Saturday Night Live?

1:01

Yeah.Do you know the the Bill Hader sketch was Stefan?Oh, I love Stefan.Stefan and he's like, this club has everything, yeah.And then it's a, then it's a list of, like absolute debauchery.Yeah, so this case has everything.

1:18

OK, Not quite as wild as Stefan's stuff, but this case has.What does it mean to be part of an Ethics Committee?What does an Ethics Committee even do?What is the purpose of medicine?What should medicine say yes to?What should it say no to?

1:34

What is the body for?Is the body something we can infinitely change to suit our desires or the desires of other people?Or does it have a kind of internal integrity that shouldn't be violated?What are children for?Why do people have children, and what are the rights of parents to control the bodies of their children?

1:54

What does it mean to be a person?Are there certain kinds of disabilities that render somebody less of a person or less worthy of the respect and dignity we owe to other people?And what does it mean to have a quality of life like?How do we rate that for another person?

2:11

So just a couple kind of big questions and bioethics.Goodness, it's almost like a like an exam question where if it wasn't real, you wouldn't you.You wouldn't imagine that all of these different issues were all wrapped up into the same case.Yeah, so I'll say this case, unlike maybe some of the other cases we'll do this season, it's not as if this happens all the time.

2:32

It's a pretty rare case, although it we'll get into how often we think that this happens now.But I think it's not so much, you know, a paradigmatic case of like things that ethicists always have to deal with, but rather the kind of case that's going to bring up all sorts of really important bioethics questions that I think presses us to really get our term straight, presses us to think about, you know, individual bodies in certain ways.

2:59

So for me, it's more of a case that brings out and and it's why I teach on it a lot is because I think it brings out these big kind of overarching questions that we should be asking in bioethics, or at least that when I teach bioethics, these are the questions that I center all of my course around.

3:15

So for that, it's a really good case and it's just like I think it's a case that if you work in bioethics, you've probably heard of, but it's not probably one that most people have heard of.OK, OK.All right.So, so what's the case?This is the case.

3:31

Wait, you you told me to lower my expectations and my expectations could not be higher.OK, well, I hope to meet them then, so I'll try to be as enthusiastic as I can.This is the case of Ashley X.Ashley X OK, I've heard of this.OK, so Ashley X, obviously not her name.

3:49

This is a pseudonym given to her by her doctors that were treating her when they published about the case.X obviously stands for a last name that we don't know.We do know her name now because her parents have blogged about her for a very long time.

4:06

You can check out more about this case on their blog, which is pillow angels.org.We'll talk a little bit about that name, maybe in a second.So whereas some of our other cases have made it to the courts, this is not a court case.But it became a wildly debated case in bioethics and in the media because of some of the backlash that the doctors and ethicists got when people heard about the case.

4:29

So that's why it became famous.This is unusual also because an Ethics Committee and an ethicist were actually involved instead of being like boy, I wonder what would happen if an ethicist would have gotten their hands on this earlier, right?Right.And so the ethicist has written about it too.And this is the late 90s.So to sort of set the stage, ethics committees had been in development.

4:48

In a another episode, we're going to talk about kind of the case that prompted hospitals to start hiring ethicists or to start or maybe not hiring ethicists but to form ethics committees.So this probably would have predated like somebody being paid specifically, like Tyler gets paid to do clinical ethics.

5:05

That's how he makes all of his millions of dollars, obviously.Yeah, that, that and this podcast.Right, right.The two things that obviously are making us a ton of money that we do for free.So there are ethics committees, but there's not a ton in the late 90s.It's going to start ramping up right around this time between the late 90s and 2000s.

5:24

You're going to see it exponential growth.My husband hates when I use that word because it actually has a meaning that we never are using correctly.Massive growth, Lots of growth in ethics committees.I appreciate your husband because he's a he's a math guy, right?

5:40

At his heart so.It's like you're not using exponential, right?I'm like, OK, I think we just mean a lot of growth.So there's going to be a lot of growth in ethics committees right around this time.So this is one of those hospitals that just happens to have a really high functioning Ethics Committee right when the case comes up.And it's it's a big part of why this becomes popular.

5:57

Setting the stage, Ashley X is born in 1997 in Seattle, WA.All right.She is the product of what we call in medicine, an unremarkable pregnancy, meaning just everything went exactly how we think it should go.And she had an uncomplicated birth.

6:12

There's no indication that there's anything sort of health wise complicated with her until after she's born and she starts to display some symptoms of hypotonia, which is kind of decreased muscle tone.She has some feeding difficulties.She has.

6:28

This is a word I don't use very often.Choreoathetoid movements, which are irregular, jerky movements that you don't normally see in infants.And she has developmental delay.OK, so we see this all of the first few months of her life and the parents are concerned enough to bring this up with their physician and they do a work up.

6:48

She's eventually diagnosed with static encephalopathy, which is just to say that she has some sort of brain damage of unknown origin that physicians aren't sure exactly why it happened at first, but they don't expect that she'll ever recover from it.

7:03

OK?They expect her to remain at an infant level developmentally for the rest of her life.OK, so complete care is necessary.Not going to progress to making words or any type of progress.Gotcha.Yeah, so.So she's not sick.

7:19

There's no disease here.But she does have this permanent developmental delay that's incurable.OK, Years pass.Her family's taking care of her at home.They are really diligent caregivers.She starts to, let's just say so you're right, she she doesn't sit up, she doesn't ambulate, she doesn't move, she doesn't use language and and at this point, she's about six years old.

7:42

She receives all of her nutrition from a feeding tube, but her parents do say that she clearly responds when they vocalize with her and they care for her.So she's vocalizing, she's smiling, she's responding to her parents the way that an infant would, and there she's being cared for at home.

7:59

She about six years old, 6 1/2 years old, starts to go through early onset puberty.Wow, it's 6.It's 6.OK.So when people ask about this with children with this kind of developmental delay, that's not super uncommon.I wouldn't say that it's the normal progression, but it is something that happens with children with developmental delay.

8:21

OK, and in about 6 months she shoots up from the 50th percentile in her weight and height to the 75th percentile.So she starts this like rapid accelerated growth in a very short period of time when she's about 6/6 and 1/2.OK.

8:37

This is some Of course, her parents are concerned about this.They worry that she's going to get so big that they're going to have a hard time caring for her at home.OK, just like the size of her body and moving around and taking care of her in and out of bed, that type of thing.

8:53

Right, right.Yeah.So you can just imagine infants themselves, while they have a lot of needs, their needs are easier met because they're so small.It's easy to pick them up.It's easy to move them around.Even a six year old, a typical 6 year old.You know, I carry my 3 year old around.

9:09

It's possible.I don't.It's hard and it stresses my back out.But it's possible, right?Yeah.But of course, if he were much, much bigger, that just wouldn't be possible anymore.And so they're worried that the kind of intensive care that she needs is just easier when she's smaller and her growth at this point is making things more difficult and her early onset puberty, they're eventually she's going to get menses.

9:32

That's going to be difficult.She might get very large breasts, which would make it potentially more difficult for them to care for her at home.Yeah, so it'd be like the difference between caring for an infant or a toddler sized disabled person and like a teenager, right?Yeah, yes.

9:49

So their main concern here is we, we want to care for at home.These are parents who are really dedicated.They want to be able to do all of her care at home and they don't want to put her in some sort of institution, which historically lots of parents have done and is possible for them.

10:06

But really that, to them, is putting her in the hands of strangers and they think that her best care would be handled by them at home.Yeah, as many parents would as right.I mean, that feels like it would be my instinct as well.Yeah, yeah, this all seems really reasonable right now.

10:24

So totally predictable kind of reactions to to her body.What is perhaps unusual is that they go to their physicians and they say what can we do about this?What could they do, Tyler?Oh boy.I don't know.I mean, I guess we would start thinking about maybe some hormones like to delay puberty and onset of menstruation, that type of stuff.

10:49

I I guess if we're getting really kind of aggressive about this, we could look at like like growth hormone manipulation in some way to try to keep them smaller I guess.I don't know, those don't seem like run-of-the-mill type of interventions, right.

11:04

I think, I think generally people would say you know what, it's really difficult to care for a a disabled teenage sized person.But you know people do it.So maybe it's a matter of, you know, changing the physical layout of their house to make it more kind of disabled large and disabled individual friendly.

11:23

Maybe some more training or more people in the house.Right.Some more home care, bringing people into the home, learning to work with certain kinds of tools or apparatuses that can help move her body around more easily.So of course, lots of people with developmental delay are cared for at home by their parents or live in, you know, residential group settings.

11:43

So this is not unprecedented.That would be the typical course of action.You'd meet with folks in the hospital and they'd help you learn how to do these things.What ended up being unusual in this case is the doctors came up with a more potentially aggressive medical treatment plan and that involved high dose estrogen therapy to stunt Ashley's growth.

12:04

OK.It's like her physical size growth, like to make her smaller, OK?Yeah, they think it would just be easier to care for her if she remained at this size or not too much bigger versus growing to her full potential height.Because, again, she's not sick.She's not diseased.She will grow like any other child would grow physically in her body.

12:23

They're worried about how big that will be.They want to stunt her growth.How do we know that high dose estrogen therapy stunts children's growth?Because sometimes we do this.There historically has been, and this is funny, not funny.There was a time in which we gave this kind of therapy to to young girls who we thought would just be really tall and that it was like, socially undesirable to be really tall as a woman.

12:46

Oh.Man, yeah.So not something we do anymore, or at least I don't hear about that very often.Or just that kind of social problem of like, it's it's hard to be a tall woman, Let's stunt their growth, yeah.Yeah, we see the opposite, right.We see like in young, like adolescent male children sometimes that they're given human growth hormone in order to bring them from whatever, 5 foot 4 to 5 foot six or something as some sort of social utility, right?

13:14

Right.Because we think now that it's really socially disadvantageous for men to be quite short and we've given it this idiopathic short stature syndrome.So we've given it a medical label.And this is men who don't actually have a growth hormone deficiency.

13:29

So there's nothing wrong with their hormones.They just are projected to be quite short on the sort of statistical graph of of male height.And so, yeah, so we do sometimes now give growth hormone as a way to get boys to be taller.Yeah, another probably whole episode we could do on that.

13:47

Human growth hormone, right?Right.Yeah.Is this ethical or not?But parents want it, right.And so you can imagine why these parents would want this.They want to keep her a little bit smaller.We know that giving her high dose estrogen therapy might be able to do that.So that is proposed by the medical team in addition to a prophylactic hysterectomy taking out her uterus ahead of any potential complications with it.

14:13

There is some small degree of risk of cancer when using this high dose estrogen therapy, but also the parents are thinking they don't want her to ever have menses.You can prevent that by taking out her uterus.They also don't think she should ever get pregnant, right?So she's not a person who could ever consent to sex, and so her getting pregnant would be pretty traumatic for her body.

14:34

Wait, wait, wait, wait.I think that there are other ways to prevent pregnancy than a full hysterectomy for a six year old.Just saying.There are I I'm going to show you something in a second about that, you know, complicates that rationale.Because yes, of course having a uterus enables you to get pregnant, but it doesn't prevent things like rape.

14:50

Great point.Let's get into that in a second.They want to do breast bud removal.They don't want her to develop breasts and then while they're in doing the hysterectomy, probably do a prophylactic appendectomy.If she were to ever develop appendicitis, it'd be really hard to for her to communicate where that pain is coming from.

15:08

So while you're in there, might as well take that organ out anyway.It's pretty useless.I don't know.I think we're the the jury's out on this, but we don't seem to need an appendix.That is the proposed treatment plan.And this was proposed by the healthcare team or but did the did the parents do their research and come in and say here they're all the things we want to do to accomplish this goal?

15:31

Yeah, I think it's a plan that they come up with together, OK.So like the best of shared decision making, they're providing their concerns and their values and their hopes, and the medical team is responding with certain kinds of interventions that could help meet those goals.Gotcha.

15:47

So it's both medical, pharmaceutical and surgical interventions.Right.I want to show you, I think this is fascinating because I've never seen anything like this.I'm sending you a chart that was actually created describing all of these interventions that was actually prepared or developed by Ashley's parents.

16:06

OK.Can you open that up?Yeah.OK.So this is the Ashley treatment PDF, yes.All right, Ashley, treatment for the well-being of Pillow Angels copyrighted.Ashley's parents and other parents call children with this kind of profound developmental delay pillow angels.

16:23

OK.Can you tell me more about that?Well, so the idea being that, like, they don't ambulate, so they're constantly laying down, OK, And I think it's meant to be endearing, right?They're, they're angels.And they just like rest on a pillow.

16:41

Yeah.OK.All right.OK, but it's a podcast, so you have to describe it.Oh yeah.OK, so we got this.Yeah, that's true.Good point.So we've got this, the the chart.It's entitled The Ashley Treatment for the well-being of Pillow Angels.So it's got a the the top part has a Ashley's condition where it says severe brain disorders since birth remains undiagnosed, which I assume means that like they don't know the cause of it, the etiology of it permanently UN unabled in parentheses infant.

17:14

It's not a term I'm used to.We would probably say disabled.Disabled OK Got you permanently unabled infant level mentally and physically and will not improve.Average adult size was expected.Average lifespan is expected.OK, yeah, children.OK, so the next part says permanently unabled children, who we affectionately call pillow angels, form a new category of disability.

17:36

Survival was made possible through recent medical advancements.Constitutes less than 1% of children with disability.OK.Profoundly dependent.Quality of life is richer under their family's care.OK.Overwhelming majority of their family and caregivers believe that increased weight and size is their worst enemy.

17:53

I can, I think I can think of worst enemies.An extreme condition that calls for individualized options in the hands of parents to keep their children.All right.So that's just kind of like a description of her condition, yeah?It's it's yeah, it's almost like setting the stage and then it goes down into kind of the different treatment options and their their justification, right.

18:14

So and it categorizes them in improving her quality of life and also primary benefit to Ashley as like different reasons for doing these things.So breast bud removal, hysterectomy, appendectomy and sizing for Wellness and this is OK.

18:30

So this is the estrogen, estrogen patch for two years to speed up puberty closure of growth plates.OK.This is kind of getting into the weeds more than I understand.But yeah, interesting.So there's different treatment options or things on the table and then there's a little bit clarification of what those would entail and also the the justification for them, right?

18:50

Yeah.Like really interesting.So that her parents feel this need to kind of justify ethically justify why they would intervene on her body in this way.And, and in some ways this makes sense because it is unusual to give surgery and like high dose a hormone treatment to a child who doesn't quote, UN quote need those things, right.

19:11

She has no pathology, like they're not fixing anything.They're treating, quote UN quote, treating her body so that other kinds of interests can be met.And we can debate whether these are her best interests or her parents best interests.But the idea of keeping her smaller is not because that is healthier for her in any typical way.

19:29

We're going to talk about healthy, but because it makes her body more easily managed by her parents who want to be able to take care of her.Her best interests and their best interests are aligned, and they're justifying each of these procedures for her benefit.Gotcha.

19:45

Yeah.And I think in what's complicated about pediatric ethics cases in my mind is that there's the the child's interest, the patient's interest and then the parents interests.And then there's also kind of a broader, like family interests as well.

20:00

And they all kind of overlap most of the time, but not all the time.So this is interesting and the way it's framed as her best interest being front and center where I I don't know.It almost feels like some of these things are.I think convenience might be the wrong word, but for ease of caring for her at home, which is what the parents said that they're trying to do.

20:19

Like for adult care, we wouldn't tolerate this.I think in my ethics we don't tolerate this kind of argument quite as much.Like we don't say if somebody were like an adult, we're in a nursing home.We wouldn't say, gosh, it's just easier to sedate them all the time because when they're awake they're hard to take care of.

20:36

What we would say that's in a an inappropriate intervention for the convenience of staff, right.I think this is different than that.That's not what they're arguing, obviously, that they're but that.But the her interest in the parents interests are really enmeshed.Because what's going to be best for Ashley is that her parents take care of her.

20:53

Ergo, things that make it easier for parents to take care of isn't hurt.So you can see how it gets a little bit more intertwined in pediatric care.And I think that that's right.We shouldn't be able to make an easy delineation.However, collapsing them might be a problem.

21:09

So I want to get into that in just a second as we start getting into like how ethicists view the case.But just to show you this, this chart is really interesting that they made, the fact that they felt like they needed to make it, it is super interesting to me.Yeah.And so this is, and this is still up on that that website thepillowangel.com.

21:26

Yeah.org.org yeah.org.Got it.OK.This is the proposed treatment plan.Like I said, it's the high dose estrogen therapy, it's the hysterectomy, the breast bud removal, the appendectomy.This is a suite of things and they would do them pretty rapidly and of course this is, this is novel at the time.

21:45

So the pediatric team goes to their hospital Ethics Committee and they say what do you guys think?Is this, we're going to call it the Ashley treatment?OK.Is the Ashley treatment ethical?Can we go ahead with it?OK.

22:00

So imagine Tyler, you are on the Ethics Committee.What questions kind of come up for you about this?Oh man, I mean, some of we we've touched on, right?So whose interests are being maximized through this treatment.And also like I, I first of all I'm impressed at the foresight of the the team to go, you know proactively to the to the Ethics Committee and kind of get a thumbs up, thumbs down in advance rather than going ahead and doing it.

22:26

Then you know it's a different you know, asking for permission versus asking for forgiveness type of thing.I'm I'm glad they did this.I I think that I don't know if if if I were this were approached to an Ethics Committee that I was on, I would really try to be careful about identifying which treatments instead of looking at it like the Ashley treatment, like a whole suite of things like looking at each individual question or treatment or intervention kind of on its own merits.

22:53

And then see if they all are justifiable independently and therefore can kind of come together as a comprehensive treatment plan.But I don't know that may be asking too much of A lay Ethics Committee.Right.It kind of depends on who's on the Ethics Committee.Is this a group of physicians?

23:08

I think it at least has a physician leader.But I think for sure any Ethics Committee is going to ask things like what are the potential risks and harms of these procedures?What are the benefits?Whose benefits are we really talking about?

23:23

Is it benefit to Ashley?Is it benefit to her parents?Can we actually distinguish those things Are they fully informed about what all this all those risks and and alternatives do they really understand all the things that other similar parents are able to do with their larger developmentally delayed children The autonomy kind of capacity question you might ask a lot of people ask when I present this case you know are we sure that that her condition because we don't know what the origin is that it won't be reversible right.

23:55

Like, what if down the road we decide that she actually does start gaining some capacity and suddenly we've taken all these things away from her?I'll kind of just preemptively say they're pretty certain that even though they don't have a definitive diagnosis that there's no chance of her maturing in that way.

24:14

So to like sort of gain full medical capacity to make her own decisions, they think that that's just not possible.OK.So if anyone's curious about that, there you can never be 100% certain.And and the Ethics Committee does ask this and and they just decide, they don't think that that's possible given what they know.

24:30

They have pretty, they're pretty certain that that won't happen.These are all the kinds of questions you ask.They deliberate, they meet with Ashley's parents, they meet with the physicians.The committee decides that the Ashley treatment as proposed is ethically appropriate for Ashley.OK.

24:47

All right.So, end of story.Short podcast.Just kidding.I think we have more questions.There's been lots of retrospectives on this case, so here's just one summary from an article I read.It's titled The Curious Case of Ashley X.This is how they summarize the case.

25:03

In short, the primary goal of the treatment was to improve Ashley's quality of life by prematurely closing her growth plates and by keeping her small enough that her parents thought she could be cared for at home by her family.The secondary goals, according to the Parents blog, included the prevention of sexual abuse.

25:19

Definitely want to talk about that in a second?Prevention of discomfort from large breasts.Prevention of pain and hygiene issues from menstruation.Prevention of skin breakdown and infections?That might not be obvious.So the idea is that if she's bigger, it's harder to turn her in bed.

25:35

So if you can't ambulate and you're bed bound, our worry is that you're going to get bed sores.Because, you know, there's like certain parts of your body that are touching all the time that can rub.And bed sores are really terrible.And to to prevent them you have to constantly turn people over.

25:51

And that's just easier to do if they're smaller.So that's kind of the idea there.And and that's a risk for anybody who's bed bound, right?And and.Absolutely.Yeah, it it they're almost so common to the point that even really, really excellent nursing care and and movement and and turning and bed changing and all that stuff doesn't guarantee that you're gonna prevent bed sores.

26:10

Anyone who's bed bound will eventually get bed sores if they're bed bound long enough.Ease in bathing, ease in fitting in a wheelchair harness.So if they wanna get her in a wheelchair that they can strap her into, It's just easier if she's smaller.So the parents also know on their blog that this is a quote.

26:26

Given Ashley's mental age, a 9 1/2 year old body is more appropriate and that's what they so they think that the growth will stunt around a nine year old body is more, This is the quote, appropriate and dignified than a fully grown female body.That raises the That raises some questions.

26:45

I.Have lots of questions.Yeah, there's a couple things in that in in there that like really raise a red flag for me.OK, let's, let's pause this for a second.OK.So Ashley's physicians perform the treatment plan following the ethics committee's approval and everything is uneventful.

27:01

It goes well.The treatment has no complications and there haven't been any complications reported since.And this has been, you know, over 20 years ago, so.So so they did all of the things.They did all those things.That's right.OK, Ashley's parents have made a couple of kind of public statements about this, both in the media and on their blog.

27:17

So here's the rationale given by Ashley's father.Ashley's most important human right is not to be blocked from receiving a treatment that her parents, doctors and Ethics Committee all agreed would benefit her.Depriving her of those treatment benefits would cause pain and suffering, and that would be taking away her human rights.

27:37

So the human, the human right of being free from pain?Is that what they're kind of?Or hanging their hat on.Yeah, it's a little confusing.This is not typically how I'm going to talk about human rights, but like the right to treatment that will prevent pain and suffering in the future.I want to talk about, I think, what pain and suffering we're imagining.

27:56

And they later say Ashley's smaller and lighter size make it more possible to include her in our family life.We continue to delight in holding her in our arms.She'll be taking on more trips, more frequently, and social gatherings instead of laying down in her bedroom and staring at ATV or the ceiling all day long.

28:14

So because of her smaller size, they're able to take her places, which is I think most people would say yes.No matter who you are, watching TV all day, every day is not a good quality of life.Yeah.So I mean, it kind of makes sense, right, that if she is smaller that she'll be more integrated into the family, they'll be able to do more things.

28:33

But there's a lot of disabled, very, you know, severely disabled teenage people in teenage sized bodies or adult sized bodies who are able to do those things as well.Their families are able to figure it out, right?Yes, this might be a critique that you would make.OK.So when she's around 9, Ashley's primary physician and the head of the Ethics Committee write an article that's titled Attenuating Growth in Children with Profound Developmental Delay.

28:58

So they discuss everything that happened.Can you imagine people potentially raising some of the questions that we've raised after reading that?Yeah, I think, I mean, it's one thing to do this kind of in a somewhat closed environment where there's an Ethics Committee and and a treatment team and a family and you guys all come together and make a decision about how to care for this person.

29:20

But then I think you're really open.You must be really confident in your analysis and your ethics and even just the medicine itself to turn around and then publish it, right?I mean that that feels like opening and saying, here's what we did, critique me, right?

29:37

That's what it feels like.Critique me or do likewise.Oh yeah, right.So so there's like a couple of reasons why you might publish on a case.But all of those reasons, I think, boil down to teaching the audience both what you did in either saying we messed up, you need to know why we messed up, or we did a great job and you should consider doing this in future cases like this, Right.

29:58

So this is their rationale.In the paper they say when deciding whether it's ethically appropriate to attenuate growth in these children, there are two primary considerations.First, does growth attenuation offer the patient benefit?And 2nd, does growth attenuation do any harm to the patient?

30:13

I love that they just boiled down all of ethics to harm versus benefit, but OK, So the question here then is whether there's a reasonable expectation of improved quality of life for a non ambulatory child with profound developmental delay and at what risk.So these are their big questions.

30:30

What are the benefits?What are the risks and how are we weighing those against one another?These are.That's not a bad that's an obvious question.Any case, there's very few cases in which you're not weighing benefits and harms.I actually don't know that I can think of any case where that's not a question.At least I don't know that it's always the only question for the even the primary question, But it's definitely always a question.

30:50

Yeah.And I think, I think the point is that it's not the only question, right.So I think ethics should not be boiled down to just a cost benefit analysis, right?It's more complicated than that.We're not all pure consequentialists or utilitarians, right?

31:07

So but also the parents weren't making a purely consequent like a purely cost benefit justification either, right?I mean they were talking about human dignity and they were talking about like integration in the family and these more dignity or virtue based justifications.Right, right.

31:23

And and I think that those maybe not at the time, maybe at the time that was seen as like too much to get into and this kind of bioethics write up.But I think these days those questions would definitely be important to ask and then to write about if you were going to write up a case like this.

31:40

And I'm not saying that they didn't bring that up at all in their paper.But when you say they're really just two ethical questions and then you outline them that way, it does allied some of the more nuanced questions about dignity there.Let's just say if that was the approach we took in like a paper in grad school, like we might, yeah.

31:59

OK, so for them, I think that, you know, the rest probably is somewhat predictable.They're going to argue that it's her in her benefit to be smaller so that she, her body is less burdensome and more accessible to her parents.Burdensome is such a tough word for me there.

32:16

A smaller person is not as difficult to move and transfer from place to place.And they talk about, you know, that it seems like this is for the caretakers rather than the child, but actually it's really for the child as well, because a child who is easier to move will be moved more frequently.Right.So again, they're kind of just saying it's really hard to tease out what's for the parents benefit and what's for the child's benefit because really what the parents are asking for will also be for her benefit.

32:42

You know, the concept.If you're a real consequentialist, the consequences of that will be predictable in the world that we live in.It's just going to be easier to take her places to move her around.That's all for her and the parents want to continue to care for her.They will.They potentially will find themselves unable to do so if she grows to an adult size.

33:00

It's not the only considerations, but because it's what the parents want, we're willing to do that for them and they end it like this.For all these reasons, growth attenuation in the non.I hate when we do this too in the non ambulatory child, as if she's like representing all non ambulatory children with severe developmental delay seems mutually beneficial for caretakers and patient.

33:23

There does not appear to be a conflict between the interests of the parents and the interests of the child, so there's no conflict there.They're not saying that they're collapsing them, but in this particular case there's not a distinction.What's good for them is good for her.Therefore we do what the parents want.OK, OK.

33:39

I mean as far as far as like ethics case write ups go, I mean, I've read worse, right?Sure.I've read, yeah, yeah, no, no.And the and the ethicists who published this is a a well respected ethicist.So not disparaging that in any way, but this gets published.

33:56

It creates kind of a frenzy.What might be a kind of group that you can imagine that is going to take Umbridge with this treatment plan?Oh man, I think that there's a long line of people, I would say.I mean, disability rights advocates, I think might have some questions.

34:14

I think parents of current you know, disabled individuals, I think that there's a question about whether or not this is what medicine ought to be used for.So I think people who are, you know, the tools of medicine is what I mean.So kind of a question about is this is this good medicine or is this something that's kind of outside of the that realm of what we think to be the purpose of of medicine.

34:40

So it it almost feels, and maybe this is a bad analogy and you you'll laugh at me for this, but it it almost feels more like cosmetic surgery than it does curative surgery where where these things are doing not not for aesthetic value but almost for convenience.

34:56

You know, the ability of these other interests to be to be maximized and not specifically disease treatment or illness or you know that type of thing.But, but you know that maybe that's just too simple.No, I think so.You're exactly right that it's going to be the disability community.

35:14

That is many folks are from that community, are going to be upset by this because, well, for a lot of reasons that I want to get into.But yeah, the idea that we like, just manipulate the bodies of disabled children for the convenience of their parents, that's going to upset a lot of people.

35:30

And I think just like you said, what is, what is the purpose of medicine?Should medicine be trying to fix our bodies to make us more comfortable in a social environment?And that comes up with cosmetic surgery?You know, it's not a perfect analogy, obviously.So I don't want to, like, totally equate these things.

35:46

But it does seem to be like somewhere in between something like cosmetic surgery and something like, you know, fixing a pathology, which is typically what we think of medicine is doing, is like, there's nothing wrong with Ashley's body.And yet we're doing a lot of things to Ashley's body, like permanent things to her body that will forever change her body.

36:05

Yeah.And we should be really careful about that.So I have this great quote by somebody.I did not expect to have this quote.This is a quote by Art Kaplan, who, OK, is a famous bioethicist, in that he's always on the media.Like he's always being interviewed about ethics cases.We need to figure out how to get that job.

36:22

How do I get to be the person who gets to comment on every ethics case?Maybe I maybe I.Don't wanna be the case, you can have that job.Yeah, maybe not.But he says keeping Ashley Small is a pharmacological solution for a social failure.The fact that American Society does not do what it should to help severely disabled children and their families, permanently freezing a person into childhood is not the answer.

36:43

That's a very bold assessment of this case, I think.Yeah.Yeah.That's interesting.And and I agree with kind of the the overall sentiment like it's not the case that we're fixing disease or pathology or something that like we said, but also Ashley's body for all of its disabilities and all of the the ways in which it is not functioning the way it should be.

37:06

The things that we're now going to intervene with are actually her body functioning properly, right, growing and maturing and and all those things that physiologically a body should be doing.So we're actually short circuiting the parts of her that are actually functioning somewhat normally.

37:24

Yeah, a healthy woman grows taller from childhood and develops, typically develops breasts and has menses and and This is why I think it gets to like, what does it mean to have a body?Like what is the purpose of a body?We would never want to say something like, well, if you're not using your breasts and you're not using your uterus, it'd be perfectly fine to just remove them.

37:47

You know, like if they're not going to be useful to you.So if you're never going to breastfeed and you're never going to have children, and then let's just get rid of those things.Like, that's not typically, like, if a young woman came to her doctor and said, like, there's nothing wrong with my breasts and my uterus, I just want you to take them out because I don't think I'm going to ever have children.

38:03

Yeah.I think there would be a lot of questions about, right, whether that's appropriate or not.Yeah, And and that's kind of even, leaving aside the the issues of like gender dysphoria and and other reasons why, you know, people would pursue A surgical removal of breasts and otherwise healthy, healthy breasts, right.

38:20

Or other, you know, whatever parts of their body.But yeah, this is this it it it almost dances between a couple of different issues and straddles different and maybe even conflicting justifications as it kind of progresses, I think.Yeah, yeah.

38:35

So this this case often gets deemed something like a medical fix for a social problem or or the ill.If there's anything that's I'll it's you know, a social I'll our society is not very good at supporting families with disabled children.That is just true, right?I I don't know anyone who would argue that like we're doing a great job caring for disabled people amongst us.

38:56

Nobody would argue that we're doing a terrible job.And so a lot of disability advocates will want to talk about like a social model of disability.So the quote, UN quote problem with disability is that our society is crap at accommodating people with disabilities versus the problem with disability is like individuals have like bad bodies and we should fix those bodies, right?

39:14

So that's a pretty different orientation.So if you take the kind of social orientation, it's like what can we do to support Ashley's family to care for her in her developing body versus like how do we fix her body so that she's easier to care for by her family.That's a real what some people call a medical model of viewing her body.

39:32

Her body is the problem.Her body is the thing that gets fixed.Right.And we have tools in which we can fix that, those things.So we ought to do that.Yeah.Different.Yeah.Different question.We often get interesting kind of alignment of of interest from cases like this.

39:48

But what what was the religious view of this?I mean, because we we, we often hear criticisms of ethics is, you know, playing God.However, what whatever that means to an individual person.But were there folks making the case that this is, you know, Ashley's body is perfect because God created it in this way.

40:07

And we're quote UN quote playing God by intervening.That's a big one.Yeah.No, no, no.That's like I wrote a book about this.So I think it's more complicated than that.So there is a I didn't see in this particular case as much of like a religious reaction to it as as some of the other cases we're going to talk about.

40:27

Very few religious groups are going to say something like all bodies that are born are good, therefore let's not medically intervene upon them.That's a pretty rare religious argument because most of us think like, insofar as you think it's OK to use medicine, then there's lots of good uses of medicine for newborn children.

40:45

But there is a kind of Catholic argument I've heard that is something about kind of the internal dignity of the body, the inherent dignity of a body that requires a lot of justification to intervene upon, and that some of this might constitute A mutilation.

41:01

This is a word that I think is not common in secular bioethics, and it sounds real because I think it sounds really harsh.But there are, like appropriate mutilations of the body.Like there's times in which you'll have to, say, surgically remove a part of the body because it's so diseased that it's risking the rest of the body.

41:17

But you wouldn't do that unless you had a really good reason.Like you had a reason of like, it is bad, but it is a lesser bad than the bad of like that, you know, maybe a gangrenous limb killing somebody.So you have to surgically remove something to protect the rest of the body.

41:33

That's the justification.But for her you can't make that justification.And so this would be an like an unnecessary mutilation of the body.That would be the only specific religious argument that I saw coming up more than once.But like the kind of playing God argument, I haven't heard quite as much.

41:49

OK, OK.So I want to do like a quick recap kind of pro and con or the, you know, the pro Ashley treatment, anti Ashley treatment.I think the pro we've we've pretty much encapsulated the idea that like the harms are fairly limited, the risks are pretty limited.

42:05

These are surgical interventions, but they're not uncommon.And we could have predicted the risk of these surgeries, which the parents thought were worth it.We cannot if we're gonna talk mostly about best interests, and this may be.I don't know if we've talked about this on the podcast as much, but typically when we let a second party make a decision for the patient like a parent, we sometimes will talk about like substituted judgement.

42:28

So well what would the patient have wanted if they could speak?That's not going to be the case here because Ashley has never been able to have the voice kinds of preferences for herself.So instead we use a bet like what's in her best interest.That's the standard proponents of the Ashley treatment will say.Her best interest can't really be separated from her parents best interest.

42:46

We shouldn't perpetuate this myth that parents are like these sacrificial people who only work for the benefit of their children.Their convenience is also important.Their ability to care for her is really important.Some will argue this isn't really violating her dignity because she has no autonomy or interests.

43:03

That kind of dignity.Arguments don't make sense here because she's not going to be able to fulfill the use of her body and the ways we typically talk about it.I have huge problems with these arguments.Just, you know, so some people were saying, you know, well, she's never going to be able to, like, marry and procreate and live an autonomous life.

43:18

So those organs aren't as useful to her.So let's cut them off and throw them away.Yeah, we again, we're not going to make that kind of argument for other people.I'm not sure why you'd make them for her, but these were arguments that were made.People were worried that there's some sort of disability agenda happening here.

43:34

These disabled folks aren't really, they don't really care about actually trying to push their agenda on us.It's an ideology.We're really just talking about Ashley and her parents.Social supports are good, but they don't really exist in the way that they should.And it'd be nice if we lived in a utopian world in which, you know, Ashley's parents had all the support they needed.

43:50

But that's not the world we live in.We need to, you know, respond.In the world we live in.We can offer these medical treatments.We can't change society into the kind of society we want it to be.And it's really her parents right to make this decision.This is a private matter between her parents and her physicians.

44:06

And we shouldn't, you know, be trying to push other people into that conversation and that this is really a good use of medicine.So it's OK sometimes for medicine to intervene for social rationale for social goods.OK, all right.I mean, there's a lot of good arguments there, some not quite as strong.

44:26

There aren't good arguments there.Yeah, this will happen on both sides.Of course.The counter argument's something like a real questioning of whether it's really in Ashley's best interest or her parents best interests.So there are real, serious and unknown risks of this therapy and the parents interests really shouldn't trump those of their children.

44:44

We're not asking them to be like sacrificial beings, but we are saying that the child's interest always should trump and that we should do our best to separate those.There were a lot of arguments about the violation of her body and her rights.The idea here, I think that we sort of said like we shouldn't intervene upon her body with medicine unless it serves her needs.

45:04

And it's it seems like we're intervening for some sort of vague future threats that aren't actually even potentially happening.So there's like fear that she'll be too big, that she won't be able to be cared for, that these are all kind of like future worries that may or may not actually come to fruition.

45:21

But this is like a present, like intervention upon her body for some more or less vague threat about her future.Others will argue that she is being made into a perpetual child and that this violates her dignity.And this is a problem always in the disability community is that people with disabilities, especially cognitive disabilities, are seen as like, perpetual children.

45:40

I've even heard some people say like, well, it's good that her body matches her mentality and this really bothers me, right?What I mean, what does that even mean?Like that we have this kind of expectation that you know, as your body gets bigger, so your mental capacity also grows and that those things need to match.

45:57

And so for that to match, she needs to be kept small.But gosh, is that so insulting to, like every adult in a adult size body who has a developmental delay?Or or an adult in a very small body.Right.Or a little person.Right.So yeah.Which also I I know lots of little people will say, like they get treated like children all the time and that's like pretty gross.

46:17

So the idea that your mentality should match the size of your body, I think let's just squash that.That is wrong like from both ends.Yeah.There's also arguments about like her gender and her parents preventing her from becoming a woman, and that there's like a dignity in growing into a woman's body that's being prevented here.

46:34

Breasts are inherently good.We don't need a justification for their usefulness.Cutting them off isn't good for her.Like needs a better justification than just than they gave.Yeah, I think it's also, it's also something we haven't talked touched on is that she is disabled to the point that she won't be able to appreciate any of these things.

46:55

So it's not like she's gonna feel one way or another about being dignified or receiving the benefits of these things because she is profoundly disabled.Right.And that's what the Pro Ashley treatment argument side will say is that whatever good comes from the woman's developing body, she can't appreciate.

47:14

It's weird to talk about potentially, like the dignity of those things if she herself can't appreciate them.I think the battle really there is like, is there an inherent good that is there, regardless of whether you can appreciate it or not?And if you think that you need to be able to appreciate it in order for it to be of value to you, then you can see why you'd be a little bit more for this treatment than against it.

47:36

So I think these are really like, these are kind of almost like ontological.These are like deep questions about the purpose of the body that I don't think bioethics itself can answer, but it's good to raise them right Also.And we sort of skipped over this, but there was this argument that a fully mature woman's body would be more attractive to a potential predator.

47:58

And I just don't know that this is empirically true.So the worry was like, if she develops breaths and she look like looks like a flourishing woman in her body, that she'd be more liable to be abused by a potential caregiver.I can't.I just, I'm not sure that that's true because lots of children are abused, like sexually abused and who don't have sort of adult bodies.

48:21

Yeah.The statistics on the amount of people with developmental disabilities who are sexually assaulted is really high, but I don't know that we can say like that's because they have attractive adult bodies.I just not sure that that's true.Yeah, that puts some blame a little bit on the victim.

48:37

Right, right.If her body hadn't been so attractive, maybe she wouldn't have been assaulted.Like that's that's gross.That's gross, Yeah.So this keep what keeps coming to mind is this idea of proportionality, right.So if we have a harm we're trying to avoid, we should try to avoid that harm, but only do things sufficient to avoid that harm.

48:59

And what I mean by that is like, you know taking a gun to a knife fight you, you don't want to disproportionately react to or or overtreat.And so these questions like her potential potential for being abused, like that's real and present and and and something that that's terrible within our society.

49:18

But there are other ways in which we can ameliorate that risk rather than all of these things, right?You know her.And again, I think that kind of speaks to the the social side of this whole issue, right the the social ills.Yeah, let's just try to find other beings to prevent her from being abused then.

49:36

Like modifying her body to make it less quote UN quote attractive to an abuser.Yeah.So, and then there's an argument.We've talked a little bit about the, like the medical model of her body versus the social model from a disability perspective.But there's also this, like, worry about precedent.So a lot of folks who are like, gosh, if we can do all of these things for Ashley, what's to say that, like, the next parent with a developmentally delayed child can't go even further?

50:01

Like, she doesn't need her legs.Should we just be able to remove those?She can't use her arms.Like, you know, at what?When do we stop with, like, medically intervening, surgically intervening upon a body that has parts of it that are quote UN quote useful?So where does it end?

50:17

And and we, I think, have to be careful about slippery slope arguments, of course.But you can see kind of that fear of like, if this is like, everyone just finds it ethically acceptable to intervene in these ways.Where does it stop?Yeah.And and if the justification is the usefulness of that body part, I mean, there's a lot of parts of people's bodies that aren't being used and not just people who are disabled, right.

50:35

So you think about somebody who's permanently, you know, paraplegic and never going to walk again.We don't proactively remove their legs because they're not useful, right?That's just not something that we do because of a whole list of other reasons.Right.We'd have to have a good justification for doing so.

50:52

And and that does sometimes happen.But yeah, it's not that you don't go.I don't think you're ever going to walk again.Let's just take those legs off now.That's not typically the reaction.Yeah.Yeah.What I want to say, by way of some conclusion, is that I think they're really strong arguments on both sides of this case.

51:08

It's not obvious to me that, like, this is one of those cases where something was just done wrong.To Ashley, I I do have my own if I had to go one way or another.I do have a preference.But I do want to admit that, like, both of sides on this argument make really compelling cases about what really should be the work of medicine.

51:26

Yeah but and and I think what's impressive about this case and the stuff that I've read about it is the the thoughtfulness of the team and the family and the the Ethics Committee and the ethicist who who wrote about it.I I think coming to that same space that you are that there are good reasons on on both sides.

51:47

We're picking one because we have to pick one and we're these are our justifications and and holding that up and saying you can use these justifications for other things, but that's on you, you, you, you are a moral agent and you get to make your own choices.But this is how we came to this this conclusion for this case at this time.

52:05

Yeah, I mean I think maybe what I'd want to say didn't happen so well is so this got so much backlash after they published it that I know that these things still happen.So if we talk about sort of effect on future cases, the Ashley treatment is still, it's not common because I think children like Ashley are uncommon, but that it does still happen and it doesn't get published on anymore because people are afraid.

52:31

Both the parents and the clinical team, for good reason, I think are afraid of kind of the public backlash against it.So it happens that Ashley's parents say on their blog that they've met maybe a dozen other families who have done a similar sort of treatment plan.

52:48

In the grand scheme of things, that's actually not very many.There's probably more that aren't talking to them, but I I think I want to be.I do want to be careful about like this, setting some sort of precedent because I think that there's real caution that we need to have in these sorts of cases.

53:03

Yeah I think maybe the most not I guess maybe troubling the the thing that causes me pause about this case is that chilling effect is that you know I think it's really noble that that they went through this analysis and and proactively thought about the pros and cons and and came up with the justification and then did it and then published it.

53:25

I just think that transparency in these situations and being willing to to stand up and say this is what we did may be controversial here's why we did it let's discuss I mean that's that's the work of bioethics in in my in my mind and anything that shuts down conversation I think it it's not what we're trying to do.

53:43

I think what I'm trying to do is in in ethics.Yeah.I think that's a good point.And and just because you want to critique it, I I hope you don't mean and I don't think you do that like, therefore we should be really careful in the ways we critique how they went about their ethical analysis because we don't want to chill other people from publishing about it.

53:59

No, no, no.Yeah.I mean really like we need to have open conversation about this.And I think it's unfair for me.It's deeply unfair for some of the ethicists who said, you know, it's just this these disabled people in their ideology trying to force it down, you know, every case.That's not fair.

54:15

People who have children with disabilities have a lot to say about what it's like to care for them right in their adult bodies, and they should be able to say that, right?That's part of the discussion if there's an alternative.So lots of parents came out and said, listen, I have a kid like this and they're in an adult body and here's how I take care of them.

54:32

That's an important perspective as it is.Some people were like, listen, my kid, who's like Ashley, lives in this residential facility and you guys made it sound like these are all horrible places where everybody goes to die.And that's not true.There are some wonderful facilities that children can live in because maybe it's not appropriate that they're always home with their families.

54:51

Maybe they're it's OK to, you know, talk about residential living for our children with disabilities.And and if you make it sound like everybody there just goes there to die and get abused, then those places will never flourish.Yeah, I think there's also an element of Ashley's parents being I I think they, they had some privilege within society as well-being, able to imagine a situation in which they were able to, you know, access this healthcare and pay for it and and be able to care for their child at home.

55:21

And there's a lot of scores and scores and hundreds of people across the country who may be in a similar situation, who don't have the means and resources to even contemplate something like this.Yeah.Well, I think there's so much to say about this case.Gosh, we've talked about it for an hour.I could probably talk about it for another hour, but nobody wants to listen to us talk for two hours.

55:40

Probably they capped it at an hour so.Yeah.All right.Well, good case.All right.Thanks, Tyler.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.

55:59

Special thanks to Helen Webster for social media and production support.Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to 1.Podcast art was created by Darian Golden Stall.You can find more of her work at Darian Golden stall.com.

56:16

You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.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.