Dax Cowart and the Refusal of Medical Treatment
Dax Cowart was severely injured in an explosion in the 1970s. Despite his injuries, he expressed a strong and consistent desire not to want medical treatment for his injuries an to be allowed to die. In this episode, Tyler and Devan explore the landmark bioethics care of Dax Cowart and its importance to current questions about medical decision-making, capacity to refuse medical treatment, and disability.
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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
Devin, I got a a banger of a case for you today.Oh, a banger of a case.OK.Yeah, this has everything if we're going by the the theme of Stefan.So lawyers involved, there's issues about disability, there's issues about consent for incapable, type of patience, mothers involved.
0:52
God is invoked at some point.Oh my gosh, it really does have.These are like all my favorite things.Yeah, I mean, if we could just work in, I don't know what's another of your favorite things that we don't get to talk about very much.Nope, that's it.That and and my children so.
1:07
Yeah, I I don't.I don't think the little ones are going to make an appearance in this episode, but it's.Probably for the best.All right, so this is the the case of DAX cohort, and there may be some disagreement about how to say his last name.I'm going to say cohort, but DAX cohort heard of it.
1:24
I have.It's a classic bioethics case.Classic.And it just happens to be in Texas as well.So let me set the stage. 1973 July summer vacation.Dex, whose name is Actual actually Donnie and his mom refers to him as Donnie during the during some of the the quotes that we'll talk about.
1:45
But the world knows him as Dax.OK, so he's described as a a very fit, athletic captain, the football team, goes off to college, kind of likes to party, likes to be kind of a a guy who is living life to his fullest in his mid 20s.
2:02
I think that's important.So listeners, sort of keep that in the back of your mind, because I and I always joke about it with my class when I show some of the videos, which we'll post on the website, I'm sure.But the way in which the narrator will always cast Donnie Dax as, like, handsome and fit and captain of the football team, this is really important to the narrative of what's going to happen to him at for reasons I, I want to explore as you get into the case.
2:30
Right.And it's fascinating to me how often the characters in some of these big cases get get reduced into a couple of kind of stereotypes.Like for example, we in a different episode this season, we talked about Buck versus Bell which was the case Supreme Court case where a woman who had maybe, maybe not had intellectual disabilities was described in the same way.
2:52
Right.And Dax is always described as like this fit robust Texan ladies man is often referred to.There's this kind of funny anecdote that's shared about him volunteering or working as bus driver when he was at University of Texas in Austin in order for him to meet and make friends with drunk women as he was driving them back home.
3:15
After I have never heard that.That's funny and and slightly creepy, but.Yeah, funny, creepy.Anyway, so Dax, this robust young man is working for the summer in and around an area that has a propane pipeline that's running through Texas.
3:32
I think there's probably more than one propane natural gas running through Texas.So he's out there and he's actually out there with his dad doing some work or doing some work around the area and there's a massive explosion.And Exxon, the the oil company is the owner operator of this pipeline that explodes.
3:51
An explosion is huge.Not just in and around Donnie where where where he was standing when it exploded, but also all the way down the pipeline.So it's like almost like a mile long explosion.This pipe exploding.Dax is there and sustains third degree burns to his face, to his hands, to the majority of his body.
4:12
His dad was also very severely burned as well and ends up dying from his from his injuries.After the explosion, neighbors people who are who are nearby rushed to the to the scene and find Dax.They're burned, very significantly burned and according to many, many reports, the first thing that he asks or that he says to this farmer who is always described as a farmer who shows up is him asking for a firearm, asking for a gun, He says the quote that he says, can't you see that I'm a dead man, I'm going to die anyway.
4:47
Is the the quote that is he reportedly said to the fire the the farmer who was the first one on the scene.The farmer did not give him a firearm and this began a journey of Dax cohort in the medical system as he is being treated for these very extensive, very painful burns over the next several months, years into the rest of his life.
5:10
And he is consistent in one thing throughout and that is that he does not want to be treated.He doesn't want people to touch him, he doesn't want medical treatment.He just wants to be allowed to die.Yeah, And is this presumably because he's in so much pain?
5:25
Yeah, So he talks about the pain, just absolutely excruciating descriptions of what it was like to undergo the treatment for the burns.So the debridement, which is a fancy name for basically just like scrubbing the dirt out of wounds.
5:41
Also, the skin grafts are very painful.Every changing bandages, everything about treating somebody with significant, significant burns is really, really painful.And I'm sure that's still true.I remember in the one of the documentaries about him, they had him being dunked into like bleach baths, which also just and I don't think that's something we do anymore, but I can't really imagine anything more painful than that.
6:09
Yeah, yeah.Some of the later videos of him talking about what it was like he he uses the phrase it feel, it felt like I was being peeled alive or skinned alive every time that they would remove a bandage which is actually what they were doing, right.
6:24
So taking, taking dead, dying skin off of him.Putting new skin on and wounds and it's it's it's one of the most horribly painful treatments that I think we can go through as as people.This case is, I mean, it's like really hard to both talk about and to even harder, I suppose, to see in the various documentaries when I took a class in College in by on bioethics from Jim Childress, who's a very famous founder of bioethics.
6:53
You took a classroom gym show?I did.Yeah.Oh, that's cool.Yeah, I remember it.It was a very, very big class.And every Friday we would watch a documentary about, you know, something in bioethics.And I remember every Friday being like, oh, we get to watch a movie.
7:10
And then at the end of the quote, UN quote movie being so sad and and thinking, actually, I don't think I wanted to watch that movie because there they were always really tough cases.And I remember this one in particular being just really, really tough.
7:26
It's often hard to imagine exactly what the lived experience is, right?And one of the benefits of this case or the material that that surrounds this case is that Dax, over the course of his life, was very consistent and very articulate in his descriptions of what he was thinking at the time, but also kind of what the experience was moving forward.
7:47
So, all right, So after the explosion, he and his dad were first taken to the nearest hospital, about 10-10 miles away.But they didn't have a sophisticated burn unit.So he and his dad were both transferred to the burn unit of Parkland Hospital, which is in Dallas, TX.
8:05
As he was transferred to Dallas, Dax's father, who was also significantly burned, passed away actually in route.And so, when Dax Gets There, admitted to Parkland Hospital's burn unit, his mother was asked to consent to all of the treatment forms that he was in order to facilitate his treatment.
8:25
Sure, which would have been appropriate.That's my question.Is that the first bioethics question?Yeah, sure.That's the first one.So Dax did not sign any of his consent treatment forms, was not asked for his consent, and actually very vocally and consistently said no, don't treat me.
8:44
So how?How did we get here?I mean people like to say oh it's you know this is before informed consent was the thing that it now is.I'm not sure that's exactly true.I'm I think we were asking for informed consent.The standards might have been slightly different but we were certainly not not asking for informed consent before the mid 1970s.
9:03
My question would be, and I this is probably contested, is what his decisional capacity was at that time.So surely when he got brought to the Ed, even if he was saying don't treat me, don't treat me the and I might, at least he might have been in so much pain that he didn't have decisional capacity, meaning he wasn't in his right now.
9:24
Now we would have some sort of standard of decision making capacity.We'd ask some questions.But in emergency situations we often don't.We often just treat even over objection.Sometimes if we think the person is in such peril and in such pain that they couldn't possibly like, be of sound mind.
9:42
It's a legal term that I'm sure you can define.I can't.Nobody can define sound mind.It's a joke because I've tried and there's, yeah, nothing in the law that will define that term.But you can at least imagine initially he's in so much pain that he probably doesn't have decisional capacity.
9:59
By the time we're getting to like a transfer to another unit or another hospital.That's a question I would have is, does he have decisional capacity?Can he accurately say where he is, who he is, what the treatment will do for him, what the alternatives to the treatment are, what it would mean to not be treated?
10:18
And does he really understand all of that and can he articulate it?I mean, I got to imagine he's still in such excruciating pain that any kind of conversation like that might be difficult.Yeah.And his ability to so anybody's ability to provide consent is really dependent upon the context.
10:38
So what's going on with them personally with their, with their illness, with their injuries, but also kind of what decision is being asked of them.So is this a really mundane decision and basically everybody's going to consent to it like getting your blood pressure read for example.
10:53
We we don't often ask for specific informed consent for kind of routine treatment type stuff.But when you're looking at very invasive, potentially very burdensome, very painful treatments, not only do is it good ethics to have the patient involved, but also like we're not sure we have permission to do these painful things to this individual without them agreeing to it.
11:21
Right.Unless they are not capacitated to make those decisions.And really, Yeah.So the state and the stakes are really high, which both makes us like want to have them involved because it's that's happening to them, but also means that they need to have a kind of assurance.
11:39
I want an assurance of capacity to make sure that he's not saying no and we're allowing him to die with him not really understanding kind of what we're asking of him.Yeah.Because like you said, the consequences are so significant.I mean there's.He's going to die, right?Or potentially, he could die without treatment.
11:56
So later the Doctor Who admitted him into Parkland, one of his first doctors there that we have records of is named Baxter Charles Baxter and he was asked later why Dax's mom signed for Dax when he was admitted.The rationale that he gave, according to reports, is that Dax's hands were too burnt for him to actually sign the form.
12:17
Nope.That's Nope.So that's not an indication of mental capacity or decision making capacity.You can give oral directives and somebody can witness that.You did that, I mean it.Anyway, that no, your hands not working is not the same thing as not having decision making capacity.
12:36
Right.And it's required, it's incumbent, it's an obligation of healthcare providers to assess the capacity of all of their patients.And sometimes those are really easy assessments when you walk into the room and somebody's floridly, psychotic or unconscious, like it's not a sophisticated and involved examination that you have to do.
12:56
But when there's kind of Gray areas or there's disagreement or there's ambiguity, you know, making a formal assessment of whether somebody is in the right mind to make their own medical decisions is really, really important.Really, really important.Not surprised it didn't happen then, because it rarely happens now.
13:14
My assessment of, and maybe others will disagree, is this happens all the time that I get an ethics consult and we're reviewing the case And I ask, so does this patient have decision making capacity and no one's done a capacity assessment?They've either assumed something based on really vague criteria or they'll say, Oh yeah, they're oriented times 3, which is not the same thing as a decision making capacity assessment.
13:39
So they're using the wrong criteria.So sometimes you hear that truncated or or abbreviated in the healthcare system to AO times 4, AO times 3, which means alert and oriented to four generally general questions, right.
13:55
So do you know your name?Do you know who what day it is?Do you know where you are?Those types of questions my my advisor or my my mentor.When I was doing my clinical ethics fellowship he would always say AO times 4 does not decision capacity make.It doesn't even rhyme.
14:11
It doesn't rhyme, but it when you say it in a in a thick enough Scottish brogue, then everything kind of rhymes, right?So Dax during this time repeatedly asks for his treatment to stop, and sometimes he is very thoughtful and careful and deliberate about the way he's expressing those preferences.
14:29
Sometimes he is just very forcefully arguing and obstructing and and trying to prevent these things to be happen happen to him.Doctor Baxter later as he was asked to kind of recall the this case or what was going on during this time with Dax.
14:48
He said that he didn't believe that Dax had the decision making capacity to make the decision at that time because he was in so much pain and because he was on narcotics.Oh, OK.Well, so at least had some of the same concerns I would, although it doesn't sound like he actually did a capacity assessment.
15:04
He just sort of assumed and you know what they say.Yeah, I've, I've heard what they say.I think also it's interesting that we, I don't know how to say this.And so the the times in which we have to make some of these really important decisions are times in which we are not at our best, right.
15:25
So these emergency type of really monumental decisions don't happen when we have an opportunity to thoughtfully reflect upon them or you know, weigh weigh the the pros and cons or the harms and benefits against each other and try to come to a decision that aligns with my values right.
15:42
Sometimes we have to make really time and place decisions, but this was not a a discreet time and place where this was happening.This was over a number of weeks, a number of months that DAX was consistently asking to stop the treatment and stop the treatment, which I can only imagine for the healthcare providers, the nurses and and the techs and stuff who are actually doing this to him.
16:04
That had to have been excruciating.As it should be.I mean I can't even imagine treating somebody over objection is always difficult.Always treating somebody over objection when the treatment itself is excruciating.Much, much worse.
16:21
Treating somebody over objection when their objection is consistent.And maybe we'll want to talk about whether it's rational or not, but at least there are reasons for it making it much, much harder.I can only imagine how tough this was on folks giving him direct care every day.
16:37
There's one interesting report that I'm just going to read the the encounter of where they were trying to place a feeding tube through a a nasal gastric feeding tube.So through the nose, down into into the the stomach to provide him additional calories to help him gain or maintain weight.
16:54
And the doctors didn't again didn't ask for Dax's participation, kind of went ahead and did this without asking him and and Dax was resistant to it.He said that he the the tube came came out through his mouth so it was misplaced and he bit down on it and wouldn't let go it as a form of rebellion or a form of resistance to this thing that was happening to him that he didn't want.
17:18
And the Doctor Who was doing it got became very frustrated and end up storming out of the room.But later it's interesting that Dax said that he was able to forgive or his parents or his mother who is making these decisions for him at this time despite him being 25 years old and despite him being able to make his own decisions probably and all the doctors and nurses who did that.
17:41
He said the only person he didn't wasn't able to forgive with this was this doctor, because he felt like the doctor was doing something harmful to him on purpose and maliciously so that he wasn't being patient, which is interesting.Yeah, that is interesting.My question Tyler on this is, well, I have two questions.
18:01
The 1st is how do you feel about.So even if the his decision making capacity is somewhat vague or at least let's just assume that the doctors have reason to doubt that he can make his own decisions, might his consistency and his refusal be taken as a pretty strong preference that ought to be honored?
18:22
So, so might we honor his preference even if he doesn't have decision making capacity?So that's one question.And the second question is at what point is the treatment life saving versus body preserving?Because if the question is, is this going to save your life and I don't want my life to be saved, that's one kind of question.
18:44
But at some point, presumably he's not going to die of this anymore of these injuries.But if we don't treat him, he will live with a lot more pain and a lot more injury than he would if he were to receive the treatment.
19:03
Yeah.So the first question, well actually let's let's talk about the second question.It was, is it life prolonging, life saving anymore or is it body preserving, functional preserve, function preserving, maybe it's a different way of describing it.Yeah, it's the later.
19:19
So one thing I love about this case is after all of this kind of happened, the Dax cohort is has lots of video recordings and able to articulate kind of his thoughts again through all of this.And he said that the the moment when a nurse who was helping treat him through all of his burn stuff told him, he said this was kind of, in a, in a moment of frustration, said, you know what, you're going to live anyway.
19:47
And so if you just cooperate, it's gonna make your life a little bit better.And that's when he said that he realized that okay my opportunity, for lack of a better term, for my life to end because of this is kind of past and now we're into the stage of.OK, how do we make the best of out of a bad situation?
20:05
And he said that's when he started to like re engage fully full full wholeheartedly with the rehabilitation and with the treatment and stopped resisting.So I think that that was an interesting moment for for him is thinking about, OK, my life is no longer in danger.This is what my life is going to be like.
20:22
Do I want to continue to resist or maybe there's a different way.Wait, what was your first question again?Oh, so the first question is as a as a clinical ethicist, how do you feel about if you had a patient like this whose decision making capacity was perhaps being assessed as not there or on the cusp, but he is consistent in his refusal of treatment.
20:48
Might you take that preference?We wouldn't call it, you know, an informed consent process, but you might say it's a strong preference from a potentially incapacitated patient.Would you at any point say that's enough of a a strong, consistent preference to honor it versus somebody who might just say, well, he doesn't have decision making capacity, so we're going to ignore everything that he says in favor of treatment?
21:13
Yeah.So just ignoring him because he's deemed to lack decision making capacity I think happens a lot, but I don't, I don't think that's the best.I think that's the wrong answer.Doing a thoughtful capacity assessment and coming to the conclusion that he lacks decision making capacity for this decision at this time is is 1 type of analysis or one type of conclusion to come to.
21:39
But that doesn't lead us directly into the the the presumption that everything that he has said about medical care, how he's lived his life, all of his wishes and goals and values and preferences are all also out the window, right?That's also the wrong answer.
21:54
And so as a if if I were to approach a case similar to this as a clinical ethicist and I'm trying to give recommendations to folks who are making these types of hard decisions, one way of presenting that is OK, he is not the person who, let's assume that he does not have capacity.
22:14
If he doesn't have the capacity to make his own decisions, then what that means is he doesn't have the legal power to switch that light switch on or off anymore.It doesn't.It doesn't say anything about whether he prefers the light on or off or dimmed or or or some other lighting system at all.
22:30
It just means that he doesn't have the legal power of flipping that switch.And so we need to get someone in that position to flip that switch.So a legally authorized decision maker could be somebody who is named in an advance directive to make decisions on your behalf.It could be a close family member.
22:47
Generally we we look in orders of closeness, relational closeness.So spouses are generally first and then adult children and then parents and then adult siblings kind of moving outward in concentric circles of intimacy with the patient.And that's not just out of convenience in my opinion.
23:04
That is because we want the patient's voice to be the the voice that we hear, the voice that's directing the treatment.And we assume for really good reasons, that the closer you are to an individual, the better able you you're able to speak with their voice.The the way that I would recommend that his preferences be taken into account is that whoever is making those decisions has to take into account his preferences and if his preference.
23:27
And if we don't know exactly what his preferences are in this particular situation, for example, I can imagine that his mom, Dax's mom, and he and his father had never talked about what his preferences would be if he was very, very significantly burned and injured and needed long term lifelong treatment and care after that.
23:48
So taking into consideration what other people's preferences are, one aspect is, is this a consistent is it is it a persistent preference?Is it a preference that regardless of time, place that this individual has articulated this over and over and over again And although it doesn't answer the question, doesn't finally answer the question, it gives us a lot of information upon which we can make a lot better informed decision about what this patient may or may not want.
24:17
I think that's a really nice way of articulating it.It's a strong piece of evidence in absence of other kinds of evidence because even if advanced directives had been more prevalent in this time period, what 25 year old is filling out an advanced directive anticipating that they would have burns all over their body and would have to make treatment decisions based on that.
24:38
It's just something that nobody expects to happen.And even if you did, even if you could anticipate such a life, how can you even possibly imagined what that kind of life would be like or what that treatment would really entail?It's a difficult thing to predict ahead of time.
24:54
One thing that makes it even more difficult to predict what people would value or what their what their preferences would be as they're looking forward to a life of lifelong treatment or or disability of of some description.
25:10
It's really hard for people to imagine what living with those disabilities is like, right?It's like a failure of imagination.Absolutely.And there's really good empirical evidence for this that people really under predict how high their quality of life will be in a disabled state.
25:25
So most people would say I would never want to be disabled, I'd rather be dead.And yet, most disabled people don't feel that way if they experience like this.A kind of trauma that leaves them disabled is that they actually do value their lives and will rate their quality of life about the same as people without disabilities.
25:45
So there's good reason to think that people are pretty bad at predicting what it's like to live with a disability, which makes advance directives really complicated.Maybe something for another episode, but it makes me nervous about some people's advance directives.And and part part of the thing that makes it difficult especially we're thinking about imagining a life of with limited abilities in some way that all of our biases and and stuff creep into that.
26:11
And we start to presume that people who live live lives that that entailed limitations on their physical movement.That we we presume, I think incorrectly, that those are really hard, difficult lives and and nobody would ever be happy living like that, which isn't the case, right?
26:27
It's just not there's there's good empirical evidence to tell us that that's not true.Over the next several months Dax is in A1 rehabilitation center and then he gets transferred to a different one in in Galveston.And like everybody who has massive, not everybody, but it's really common to have really bad infections with your your skin being so compromised and going through all these treatments.
26:52
And he continue.He suffers a couple of setbacks with with his recovery and rehabilitation, and he describes that 10 months as being forcibly tortured by the medical system.That's terrible.During this time, like I said, he continues to say I don't want this, I don't want this.
27:09
Please stop.Please stop.Psychiatry gets involved and there's actually a psychiatry doc note documented that he does have decision making capacity, but everyone just keeps ignoring.It.Oh no.So why?Also, what do we know about his mom?
27:27
As a mother, I can imagine having a very strong bias to want to keep my son alive at all costs, which may or may not align with his own desires.Right.So his mom is the one who's making decisions.
27:44
And even though Psychiatry said, you know, Dax has the mental capacity to make his own decision, it's like a wholesale ignoring of that.So he is not able to stop the treatment.He's he's very limitedly involved in the decision making and his mom is the one who is making a lot of decisions and like like you said, a mother's love for their child to live, particularly after this terrible accident that took the life of her spouse.
28:11
I mean it's we can all see us making similar decisions.So is she a good surrogate for his desires?That's a great question.What depends on what you mean by a good surrogate.So I think I mean something like we expect or what I will tell next of kin who are making medical decisions is your job or obligation is to speak as if you were the patient, to speak as if you were your son.
28:41
If your son could tell us what he wants and this might take some imagination on your part because maybe we don't, you know, well at this point he's capacity.So we'll just kind of put that to the side because obviously then they should have been listening to him and not her, but let's say he wasn't.
28:58
We ask of these surrogates to make substituted judgments, speak as if you were this person.We're asking you because, like you said earlier, we think you know this person well.You're close to this person.You are better than we are, at least at predicting what it is they would say if they could speak for themselves right now, that is your job.
29:18
Your job is not to make decisions for them that you think are right.It's to make decisions they would have made.That's the gold standard.And so, like, I agree, and a good surrogate is someone who doesn't even have to articulate that.That's the standard by which they're making decisions, but they have to make decisions in that way.
29:37
So this this brings up another question.What if you just simply don't know what the decisions would be?How?How do you make a decision in that way?Yeah.So in that case, we use a different standard, a best interest standard, which would just ask you to make decisions that are in their best, in that person's best interest.
29:54
And you know that's not as necessarily clear cut as we would like it to be, but decisions that preserve their life without burdensome treatment.I mean it it gets really complicated in the case like this because I want to save his life or I can imagine wanting that and at the same time recognizing the incredible burdensomeness of the treatment that is preserving his life.
30:19
And so I think that would be, you'd have to really weigh kind of risks and benefits of treatment and that and that's kind of the standard you'd have to use if he had never been able to make decisions for himself, which of course very young children or people who've never had decision making capacity, that's what we would need to do for them.
30:36
But we would have some.I I hope at 25 you have some indication of the kind of person that Dax is and what he enjoyed and what his goals were and if he'd be able to meet those goals given this life that he's now in.In situations where we don't know what the patient would have wanted, when we're working under what we call the best interest standard of medical decision making, there's a lot of ambiguity.
30:59
There's a lot of flexibility and autonomy given to the surrogate to tell us what what they would have wanted and what the patient would have wanted in that situation.But it's not.It's not unfettered.It's not without limitations.Like, you have to be able to tell us a story that makes sense about why your decision aligns with what this patient would or wouldn't want.
31:17
And so in this situation, we had a patient who is capable of making his own decisions, at least according to the documented psychiatry notes at the time.And the the patient's mother was able to make decisions.And she's described as someone who is very religiously conservative, that she identifies herself as being a a devout Christian.
31:38
And she believed that continuing treatment would have been immoral in the eyes of God.And if God wanted Dax to die, he would have already had died.And so she said, quote, had I believed it was in God's will for him to go and die, I think he would have.
31:53
I could have accepted that.But that wasn't God's will after he is going through this treatment and and like I said, the one of the nurses kind of was able to get through to him and able to convince him to start participating in his in his treatment and to stop resisting because he would like was going to live anyway.
32:13
That didn't answer all the questions for for Dax in his mind about whether he wanted to live like this, and there are at least 2 reports of attempted suicide afterwards.Yeah, so he really consistent in his desire not to live like this.And Despite that, the medical staff proceeded with the treatments and continued to ignore his request to leave and to stop.
32:34
Ultimately he did consent to and participated in the treatment and he was very clear that it's not because he ever changed his mind.It's because that he had the understanding that if he was going to have any type of quality of life that he had to participate and preserve that for the future.
32:54
And so that's what he did.So after he got out of the hospital, he was, he was blind.He was mostly unable to hear, he'd lost all, but I think he describes one bit of a thumb.So all of his hands, he'd lost fingers because of the fires and he was listening to.
33:11
And this is kind of a funny, an interesting, funny anecdote he tells later.So as he was in this period after being in the hospital, learning to live with these new limitations and pain and treatments and kind of the reorientation of what his whole life was going to be, he was listening to audiobooks, as we all do, and heard a story about a Supreme Court Justice who was blind and who was actually able to, despite being blind, was able to be on the Supreme Court.
33:43
And it inspired him to pursue going into law school, trying to follow in those footsteps.He was inspired by that story.So he goes to law school as every good as every good man will.OK.That's right.So, yeah, so he goes to law school and had a very difficult time in law school.
34:03
He a lot of the accessibility things that we have in higher education or all education now as far as like people helping to take notes or audio versions of material and all of those things that would help somebody with disabilities be successful were not in place or at least not available to him.
34:21
And so he said that he would sit in class where he would have a hard time hearing, couldn't see anything, and just try to memorize everything that came out of the the words of the professor's mouth and took him several years to graduate from law school.Ended up graduating in 1986 from Texas Tech Law School and went on to get married and to start a career practicing law.
34:45
Specifically advocating on behalf of patients and folks who were injured.So tort law, personal injury, that type of.I was just thinking, I mean, that's incredible.And thinking about the IDEA Act, which helped to make education more accessible to people, that's that dates back to is it 1975?
35:10
So this would have already been in place.Law school is maybe not the place that this transferred to, but wouldn't he have had?I'm a little surprised that he didn't have more access to disability accommodations in law school.Yeah, there's not a lot of material talking about like what he was able to do and not do.
35:30
And part of it I think was what was available at that school at that time.And maybe he was the first person who was blind and hearing impaired that was trying to.And so it doesn't, he doesn't ever reflect upon it as malicious or or anything like that.But but he did recognize that it was a significant barrier to him, you know, passing, getting through law school quickly and as with his peers.
35:55
But it was He was eventually successful and eventually able to develop a practice specializing in advocating for people who were injured.So that's incredible.So he goes to law school, finishes law school, and then what?So he practiced.
36:11
He got married, He was practicing law.He got connected with a group that specializes in trial, trial law.And so he got connected with some individuals, a guy named Rex Houston.He's kind of a really famous Texas plaintiff's attorney, and he was a bit of a mentor for Dax.
36:32
And and Dax ends up practicing and working and teaching a little bit.He talks about later being involved with the medical school, giving lectures to medical students and law students at at University of Texas Medical Branch in Galveston, as well as around Houston and kind of the the greater Texas area.
36:52
Rex Houston has got to be the most Texas name I've ever heard.Yeah, and I think that his personality was as Texan as you can possibly as imagine as.Well.What questions do you have?So when you bring this up in your classes, what what are some things that you want your students to to think about or to reflect on?
37:11
Good.So this is often cast as a informed consent case, which that element is certainly there.So what are the elements of informed consent?Who can give informed consent?Which inevitably leads to the questions we've already had around decision making capacity.
37:27
So how do you assess it?When does a person have it?What do you do if it's in question?So that's kind of the the big a big question that comes up.And then I think pain treatment in general, pain is one of those things that we just feel like we have to mitigate and that we've gotten I think better at.
37:45
I think burn care is still really tough, but I do think there's been advances in the way we treat pain positively.So that's another kind of question of like how do we treat this person's pain?What would be, how much can we and how many narcotics could we give before they become unconscious?
38:05
And if that were to happen, is that OK?So there's questions around like how much pain treatment we're allowed to give that has changed and constricted after the opioid epidemic.So this has become a huge issue once again is can we adequately treat pain before people start getting too nervous about over treatment, disability rights and and like we said, the imagination of living with a disability.
38:30
That for me is a big one because he's still and he just passed away so which is is quite sad.So he lived, but he lived a long life and by all means of a kind of flourishing life.So married, had children, had a law practice.
38:46
These are all things that most people would think we're good and he would say we're goods in his life.He always contended that they should not have treated him and that's tough.That's tough to reconcile.Yeah, it would be a different case if after the end, he was grateful for the sacrifices of everybody and not listening to his, you know, his, his desires at that time and persevering and grit and kind of overcoming a Hallmark type of Hallmark movie type of ending to the story.
39:15
But so he went on and said something.So here's a quote from from Dax.I'm enjoying life now and it feels good to be alive.I still feel that it was wrong to force me to undergo what I had to do to be alive to make this clear.
39:32
If the same thing were to occur tomorrow, knowing that I would reach this point, I would still not want to be forced to undergo the pain and agony that I had to undergo to be alive now.I would want that choice to lie entirely with myself and no others.That is powerful and complicated.
39:50
But I I think I get it because I think sometimes my students will say, well then why didn't he, you know, just finish his suicide or why, you know, that can't possibly be true.If he's happy with his life, how can he possibly say that he wouldn't have wanted to be treated.But you know, he's talking about then it was wrong.
40:08
What they did and what I had to undergo was so terrible that even though I don't want to end my life now, even though I think my life is good, it was so wrong to do what they did.They should have never done it.I think that is it's not inconsistent.
40:23
I think it's a powerful stance.Yeah, not inconsistent, but definitely nuanced and and like you said, it's complicated.There's there's layers there.I think I began to to wrap my head around his position best when I heard him talking about his mom and he said that he never had animosity towards his mom.
40:42
He understood why she made those decisions, but he thinks that she was wrong.And he said that, you know, people that we love and respect and and people that we forgive can do things wrong to us.And we can still recognize that it was a wrong thing to have been done.But we can still love them and respect them and and have them part of our lives moving forward.
41:01
It's not required that if someone does something wrong, even something that's wrong that hurts you, that you carry that, that hatred, that anger with you forward, which is I think it's really inspirational.Yeah.Is there anything else, Any other kind of ethics questions that come up for you when you talk about this case?
41:20
Sometimes the the question about whether there is, whether it's the same morally or ethically, it's the same thing to not give treatment and to withhold treatment, right?So this idea of withholding and withdrawing treatment, are those actually the same thing?
41:37
Do they have the same moral value?If I am making a decision to stop somebody's treatment, is that the same type of decision as to not start the treatment?Sometimes those questions comes up and those are super interesting to me too, because I think that in bioethics we have a an answer to that question which I don't know is completely satisfying.
41:57
Well, what we often will say is, in theory, withholding and withdrawing are the same moral act.In practice, it's much more difficult to withdraw treatment than it is to withhold it, And it's emotionally more difficult for for physicians and nurses to take something away that they've previously given it.
42:18
It feels more like they're the actors in ending a person's life.And that can also be true of family members and surrogates.They can feel more like it's their action that is leading to death.So I think it's just emotionally more difficult.Yeah.
42:35
And maybe, maybe it's not Even so clear theoretically, but that is kind of our stance and it it's a convenient one insofar as a lot of times my recommendation as a clinical ethicist will be to do a time trial.So let's see if the treatment works, let's give it a couple of weeks and if it doesn't seem to be working, then we'll withdraw it.
42:53
And that can only happen if we think that it's not wrong to withdraw versus withhold.Like we don't have to make the decision right now.We can try it and see if it works and it will be the same morally as not providing it now.Yeah it's it gets to be complicated really, really quickly and it's really hard when we're we're in a situation where we have a patient who is actively refusing or actively resisting something and we're we're trying to provide or the the the healthcare team is trying to provide that.
43:27
So lots of lots of layers, lots of questions about this case.But it's a it's a really, I think, a really vivid illustration of ways in which surrogate decision maker or making medical decisions on behalf of somebody else can be really complicated and and get really messy really quickly.
43:48
Well, thanks for presenting, Dex.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.
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Our theme music was created and performed by the talented Chris Wright, friend to all, dad to two, and husband to one.Podcast art was created by Darian Golden Stall.You can find more of her work at Darian Golden stall.com.You can find more information about this episode and all of our previous seasons at bioethicsforthepeople.com.
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