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In this episode, Tyler and Devan are joined by Dr. Holland Kaplan to unpack a case of sudden-onset psychosis. We discuss the complex interplay between patient autonomy, surrogate decision-making, and the nuance of invasive interventions over a patient’s objection. How do we assess decision-making capacity in an acutely altered state? What happens when a surrogate’s wishes conflict with what clinicians believe is medically necessary? And where should the line be drawn between beneficence and coercion?
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Devan and Tyler sit down with Dr. David Shalowitz to unpack the ethical complexities surrounding the claim that clinical trials offer the best care for cancer patients. From the “therapeutic misconception” to the burdens and risks of trial participation, we explore what it means to balance patient-centered care with the pursuit of scientific advancement.
David Shalowitz, “Are Patients with Cancer Care Best Managed in a Clinical Trial?” JAMA 331 (24): 2077-2078. -
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In this episode, Tyler and Devan are joined by Dr. Peter DePergola to explore policies addressing non-beneficial treatment requests, medical futility, and inappropriate treatment demands. Dr. DePergola, the Shaughness Family Chair for the Study of the Humanities at Elms College, is an Associate Professor of Bioethics and Medical Humanities with joint appointments in Philosophy, Religious Studies, and Biomedical Sciences. He also serves as Director of the Undergraduate and Graduate Bioethics and Medical Humanities Programs and Executive Director of the Saint Augustine Center for Ethics, Religion, and Culture.
Dr. DePergola shares insights from his recent policy revision work, focusing on refining the concepts and language surrounding non-beneficial treatment, futility, and related ethical challenges in medical decision-making.
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In this Episode, Hospital President Dan Carey, Chief Medical Officer Barbara Ducatman, and Clinical Ethicist Jason Wasserman at Corewell Health William Beaumont University Hospital in Royal Oak, Michigan join Tyler and Devan to discuss their action-oriented, complex case committee work and its success.
Transcript
0:01
Welcome to this episode of Bioethics for the People, the most popular bioethics podcast on the planet according to Grandma Nancy.I'm joined by my Co host Doctor Devin Stahl, who dutifully completes the same 5 New York Times puzzles every single day.
0:18
And I'm joined by my Co host Doctor Tyler Gibb, who if he weren't here right now, would probably be golfing.Devin, welcome to another episode of Bioethics for the People podcast.Always my favorite time of the week, Tyler.So we're continuing our series of episodes about success stories in clinical ethics and we've got a, we've got a good one today.
0:42
OK, I'm excited.I've actually see multiple people on the Zoom today, not just one person.So this must be a Tripoli successful story.Yeah, well, it's one of our very, very few repeat guests on the podcast.So we've got Doctor Jason Wasserman from Oakland University, William Beaumont School of Medicine, who also works in clinical ethics with the Corwell Hospital system, which recently changed its name.
1:09
And I don't remember the new name.I apologize.Jason, tell us who you are again.Yeah, So Jason Wasserman, I do.I'm a faculty member in the School of Medicine at Oakland University, William Beaumont School of Medicine and do clinical ethics consultation for Corwell Health East, but primarily at Corwell Health William Beaumont University Hospital where my two favorite administrators of all time work.
1:33
And when you, when you guys put a call out for bioethics success stories, it, it struck me that what the relationship that we've been able to build in clinical ethics with our administration at the hospital constitutes not only a success story, but might be something instructive for other people out there doing clinical bioethics and working through their, their systems to kind of build support and change culture.
2:02
And I think we've, we've made strides in that.We have, you know, certainly more that we want to accomplish, but we've made a lot of strides.And it really owes to my MY2 colleagues here, Barbara Ducketman and Dan Carey, and I'll let them introduce themselves.Great.Hi.I'm Barbara Ducketman, and I'm the vice president for medical affairs at Caldwell Health William Beaumont University Hospital.
2:25
Hello, I am Dan Carey.I'm the president here at Corwell Health William Beaumont University Hospital, and I'm also a faculty member at Oakland University of William Beaumont School of Medicine.Awesome.And Jason, I know you've been there for a number of years, since the, almost the very beginning of the, the medical school there at Oakland.
2:45
And just recently went through a transition, like I said, the, the hospital system was acquired by a different hospital system.And that poses a lot of maybe instability, uncertainty within a clinical ethics consultation system because so much of what we do is not at the behest of, but maybe with the, I don't know, with the blessing of administration, right?
3:10
Because there are easy, easy shortcuts in order to meet their clinical ethics regulatory requirements.And I think it takes a special system, takes special ethicists to be able to work together and able to to build a clinical ethics practice that not only serves the patients, but is well supported and integrated throughout the system.
3:32
So tell us, tell us what you guys are doing out there.Well, so, yeah, let me, I'll start with a little bit of history.Right at the beginning of the pandemic, you know, there were huge financial pressures on the on the system.And the former CEO and CMO decided to sort of decentralize the ethics service at what was then Beaumont Health.
3:54
And everything kind of got pushed to the chief medical officers at the individual hospitals.They were told to sort of figure out an ethics process at your different hospital by way of, you know, cutting costs and all that.And that's how Barbara, who was the chief medical officer at the flagship hospital in Royal Oak, ended up sort of reaching out to us.
4:17
And I mean, I think there's a, there's a lot of credit owed there because not every CMO at every hospital did so there.There were different ways in which they rebuilt ethics at each of these different places.But I think we've been particularly successful.So I might, you know, not to take over the sort of moderating and hosting duties from Tyler and Devin here.
4:40
But I might ask Barbara, you know, just to talk a little bit about why she even reached out to us as in, in, in light of the many other options that you might have had.Well, this was during the pandemic, actually during the first wave of the pandemic.
4:56
And it was kind of scary because Royal Oak during the pandemic, our University Hospital took on more COVID patients than any place in Michigan.And we were inundated in this first wave.And actually, we were very concerned that we were going to run out of resources such as ventilators that could support COVID patients.
5:21
And right in the middle of this, they decentralized ethics.So I was kind of frightened because I certainly didn't want to make these decisions.And I had met Jason as part of some other work I do for the medical school and other committees and, and positions I serve on for the medical school.
5:43
So I, I called up Jason and we had a very productive conversation.And he brought in his, his partners and colleagues and I set up an ethics contract so we'd have ethics consultation.Actually, they were nice enough to do this for almost a year before we actually got the exact contracted place.
6:05
But at the same time, kind of coming out of the 1st wave and 2nd wave of the pandemic, we realized where we had issues with some of our policies that that have difficult decisions in end of life situations.
6:20
So I asked Jason and some of the other ethicists to craft new policies for futile and non beneficial care as well As for unrepresented patients.And you know, in the last year or two we've adopted those policies.
6:39
We brought it through and actually those ended up in in kind of an imitation is the sincerest form of flattery.These were adopted by all of the Coral Health East institutions.Tell me a little bit, Barbara, about your experience with ethics or like during your training or during during your career and what did Jason and his colleagues present that was appealing or beneficial or you thought that would be useful and with this these particular questions or issues?
7:09
Well, I'm going to, I'm going to admit I'm a pathologist so I didn't have to think about some of these end of life issues.I'd see the after end of life issues, but I wouldn't see the pre end of life issues since medical school.
7:25
So this is one of the reasons I was particularly kind of concerned when the ethics got got kind of put back in my lap because but I knew Jason from, as I said, other committee work and I was sure he would be a great resource.
7:41
So I felt very comfortable reaching out to ask for ethics consultation because, you know, just a little bit we started talking about before this all got decentralized when we had a an ethicist who kind of ran the whole system is I realized I didn't understand, you know, ethical rationale, for example, for rationing healthcare very well.
8:07
And we were very concerned at some point we might get there.Fortunately, we actually got within a day or two of running out of ventilators, but that was at the very peak and it started coming down.So we never had to test our, our system.But you know, that was pretty frightening for me as somebody who hadn't really thought about it a lot in a number of years to to deal with.
8:32
That's one of the reasons I reached out so quickly.Well, if I could just add, I mean, right there I think is a important piece of the the success story that we've had and that we're continuing to build.Because as you and all of your listeners will know, it's not uncommon to run into people who think that, you know, clinical ethics, even professional clinical ethics.
8:54
It's just a matter of, you know, being a good person and having some common sense.And what we know really is that, especially in these difficult dilemma ridden situations, it actually is a, a, a, a discipline that requires a form of expertise.And so I really appreciate that.
9:10
And I think that when Dan came on as president, you know that that kind of only got amplified.But Dan has his own sort of background in ethics.And if I recall correctly, Dan, this that was part of your bio when you were announced.We, I remember reading your bio and it said he has a particular interest in ethics.
9:27
And I'll admit to you now for the first time as an ethicist, I went, Oh no, I hope this is this is a good and not a bad value added thing.And it turns out it it absolutely was.But I'll let Dan give a little bit of his background as well.Well, sure, Jason.And, and I think I'm smart enough to know what I don't, what I don't know.
9:44
And I'm not an expert.I'm a champion for a number of areas, including medical ethics.So my background, I've been a clinical cardiologist for more years than I want to admit.So dealing with critically, I'll patients, dealing with appropriate use of technology, having and encouraging those around me as a chief of service to have the right crucial conversations at the right time for most for the well-being.
10:15
You know, following the wishes of the patient and the wishes of the family, but also discerning what those are and appropriate use of technology and, and what is within the scope based on a particular patient's preferences and, and previously stated wishes and and end of life situations was something very, very familiar to me.
10:37
I mean, as Jason indicated, I, I did, you know, my undergraduate background.I went to the University of Virginia and I study political and social thought.I always wanted to be a physician.But you know, I, I did graduate work, at least graduate courses while in undergraduate with Jim Childress in bioethics.
10:56
And he was one of my readers for my undergraduate thesis on an ethical critique of national service programs.And that's, so I think my contribution has been I, I, I, I have been a clinician.
11:13
It's not my primary role.Now I've been in complex situations.I'm not the one having those conversations, but I know the value of them.And I also knew our medical staff, having come through the, the pandemic, could use some extra support of a facilitator, if you will, to enhance and to increase the frequency of those right crucial conversations.
11:35
So that I think is where Barbara and I working together, then she working with a number of resources, including that to the committee, put together the complex care committee to really look at these in a systematic fashion.
11:51
And again, it is both doing the right care at the right time at the right place for the right reasons.But there isn't an A resource allocation issue here.It it frankly, for lack of a better word, there can be waste in the services that we provide, especially if they're not consistent with the the best practice.
12:13
And this is feudal care or care that's inappropriate based on the the circumstances.So wait.Devin, have you been to the University of Virginia?Wah wah yes.Also went to UVA and studied with Jim Childress.So it really sets you up for success I think.
12:30
Well, I I'd like to piggyback on what Dan and Jason said and say that actually the idea for what I think has been one of the most successful interventions is the complex care committee.And about a year ago, the ethics spokes brought from OUWB brought in a ethicist who discussed a complex care committee at their institution that dealt with predominantly patients with, you know, social needs who were were just sort of staying in the hospital because there was no Ave. to get them out.
13:07
So they were meeting once a month.I formed a complex care committee.I didn't know how often we'd meet and what we'd do.But when I, when I did this and I sent out invitations, a number of people said, well, you know, we had one in the past and all we did is discuss a couple cases.
13:25
And I said, no, this is an action oriented committee.So every week we discuss somewhere between 8:00 and 10:00 cases.And these are patients who have family issues, who have guardianship issues, who have end of life issues and where things are not progressing.
13:46
And we, we the the complex care committee offers recommendations to physicians.We often ask to get a palliative care consult to discuss goals of care because we have patients who are in end of life situations and the family is demanding everything be be done without any idea kind of where the illness is going.
14:10
So the palliative care folks are very good.Sometimes we need ethics issues when the families push even further for things that's basically futile or non beneficial care.We need actually every week and we have a broad representation with leadership.
14:30
We have an ethicist always there.We have the head of surgery, the head of medicine, the head of the MICU, We have the that's the medical intensive care unit.We have a palliative care specialist, we have a psychiatrist, we have care management, we have nursing.
14:50
So nursing refers a lot of these patients to us.Sometimes these people are abusive.They need some kind of contract and they need somebody to go in.Sometimes the families are very difficult.And we also also invite the attending physician when we can see they're struggling.
15:09
So I think what it's done is we always have action items for each patient of things we're going to do to sort of help the process move along.And you know, often times the complex care committee will write a letter kind of reining inpatient demands.
15:27
And I'll, I'll give you like one or two examples.So we had a patient who came into the hospital, the emergency center at least, you know, once a week and they would be admitted because they failed dialysis.
15:44
They would go to dialysis and they would not, they'd skip it.They would go, she would go for an hour, an elderly lady, she would go for an hour when she needed three hours.And then of course, she would have issues because she needed dialysis and she came in the hospital and then she was admitted.
16:03
She'd stay 5 or 6 days, she'd be discharged and within three or four days she would come back.So we, she was discussed.We discussed her broadly palliative care saw her, we wrote a letter, ethics was involved.It was a joint intervention.
16:20
I went down with the chief of medicine and the palliative care physician and we had a discussion with her and we told her that basically what she was doing was was short starting her own life and you know, we were not going to admit her.
16:35
She had some secondary gain from an admission.So I then have to like watch the emergency center.We would not admit her if she came in because she skipped dialysis.We dialysed her and send her home.She really didn't need a hospitalization.
16:51
She needed dialysis.So after we did this a couple of times, actually, she she stopped coming to our hospital.She went elsewhere.I don't know what she did there, but you know, we basically made her just stop abusing our system because she didn't want to do this.
17:13
It's really encouraging to hear that your complex care meetings in this committee, which I, I, I want to get into the details of a little bit more, is not just looking at difficult discharge planning because I think that's where it often defaults is this is a complex case because we can't get them out of our doors and they're stuck, right.
17:31
If there's so much more difficulty and complexity that goes into some of these types of cases that I had imagined would come before the committee like this.Jason, what was your experience standing up this committee like working on it from an ethics perspective?So, so just going back, we have an endowed lecture, the, the Jerry Weintraub ethics lecture that Stone has an internal medicine grand rounds.
17:55
And since I became involved in planning it, I, I try to think about what, what kinds of issues are we seeing on the floors that, that we can then bring a speaker in to talk about from an ethics point of view, but that it's also responsive to the kinds of things that are happening within the system.And of course, one of the things that was really complicated and we were experiencing a lot of as, as all systems do were were difficult discharges.
18:18
Again, not just from the standpoint of how do we get this person out, but from the standpoint of how do we provide the best care, the most effective care, you know, And what are our our ethical responsibilities when the social system and this the sort of network of resources in society is highly deficient.
18:34
And then it pushes back obligation on us, but that we're not the best place or well positioned to meet those social needs.And how do we coordinate and what and what are the, you know, what are the boundaries that are created in those types of situations from an ethical social point of view, really tough issues.
18:50
And so we actually invited Kehan Parsi, who I believe is on been on your podcast and also former president of American Society for Bioethics and Humanities.He had written a piece on this and and we brought him in to speak on that topic exactly.And then Barbara was in the audience and he mentioned their complex care committee and what it does.
19:08
Again, just another maybe take away for the audience is that when you have administrators who value clinical ethics and are also action oriented, these are the kinds of things that can happen within your system.Because at the end of that talk, it was 9:00 when it ended.And I remember Barbara in the aisle of the auditorium said we're going to stand back up to the complex care committee and said, Oh yeah, that sounds great.
19:30
By 3:00 PM that day, everybody had appointments on their calendars.The entire roster was populated and we were it was a go.And that's that's what happens, I think when you have advocates that are that are in upper administration, they see the value of something and they act on it.
19:47
And then as Barbara pointed out, this iteration of the complex care committee has been highly actually oriented and, and that's where it drives its success because there is high level administrative involvement and support.There's a lot of brains in the room, but there's also a lot of people with, with resources and connections within the system.
20:05
There's a lot of opportunity in that room to make things happen.And that's how things have, that's how it's, it's been successful and ethics has been grateful to be a part of that.And I think we've we've contributed to that, but it it really is.It what it it owes to the way that administration has put this sort of committee together, involved ethics and valued ethics, but also this interdisciplinary approach and also high level administrative support.
20:30
And that's the recipe for success.And I think I'll add to what Jason said, because that again, just the feedback that I've gotten from Barbara and from Jason and from other clinicians that said, you know, when you start getting involved in complex care where patients and families have very strong feelings, you, you know, they're going to be complaints.
20:50
There may be legal action taken.There may be, you know, bad mouthing of a hospital And it, I didn't think it was that big a deal.I said, if you do the right thing and you have solid process, I, I, I got your back.I don't, you know, if they write a letter to the head of the health system, you know, I, if we do the right thing, if we use good process.
21:12
And again, I'm not a medical ethicist, but I, I, I've been involved in cases and I, I know what it looks like if we do good stuff and good process, even if there's friction, if patient, you know their complaints, there's letters, there's what have you.
21:27
What we we will, we will stick to it and we will have your back and I think.And I'll say from a on the ground perspective that's that's been absolutely critical.As Barbara mentioned, we redid our A policy on futile and potentially inappropriate interventions.
21:45
We, we worked that through the, you know, appropriate channels and adopted it.But on the ground, we would still hear quite a bit of well, I'm not willing to do that.I'm not willing.If the family wants futile CPR, that's what we're going to do.I mean, they wouldn't quite put it that way, but that's what they were saying.Because I don't think that administration will have my back.
22:03
And So what we realized is after getting the policy online that we needed to take it on a tour for for educational purposes.But what made it, I think effective in at least starting in in to change the culture and in very tangible way, we've seen real success with this, although we still have a little ways to go with some folks.
22:21
We've really made strides is that when we took it on this tour, when we did it at internal medicine grand rounds, for example, we explained the new policy, the underlying ethical considerations underneath it.Both Barbara Dan were there and they stood up and said, if you use this policy appropriately and you know, everybody's involved, the way that the policy calls for, we have your back and this is what you should do.
22:42
And that makes all the difference, right?And ethics, if you can tell a clinician to use it and that it's ethical all they want.But if the clinician's worry is that administration doesn't have their back when the president and the chief medical officer stand up and say we do have your back.Yeah, and even with that, sometimes clinicians are still reluctant to go through it as well.
22:59
But I mean, we can only do so much as we can do.So since I've got, since we've got Barbara and Dan with us today, what about Jason and Jason's group as ethicists do you guys find valuable not just in their role in this committee, but what characteristics, what skills, what expertise does a high level competent professional ethics consultation service?
23:21
What does that do for your hospital?And I can log off if you guys want.To say it, just just just mute yourself.I would say Barbara probably has more of the nuts and bolts, but from a high level, I think there's credibility.Jason, you and your two or three partners have credibility.
23:40
People listen to you.You're just, you're kind and incredibly articulate.And also you understand what it's like to be in the trenches, you know, with, you know, docs and nurses and therapists where it's, you know, it's not always clear, right, what the right next thing to do is.
24:01
And I think it's that credibility that that likely was there before I got here, that was earned in the, the history that you and Barbara shared.So I think there's that.And two, you don't go down rabbit holes, you know, and I think that often happens with legal, legal involvement is that you're, you're going down this rabbit hole that's not going to lead to a clear, a, a clear path in which everyone can, can feel good despite the sadness of whatever the situation.
24:32
So credibility, competency, communication, I'd say those three elements is true not just for you, but your partners as well.I agree with everything Dan said.And I'd add they're very pragmatic.So, you know, these aren't sort of pie in the sky kind of ethics conversations.
24:50
They're very concrete.You know, here's what the family believes, here's what you know the patient wishes were, you know, here's how we do this.They're willing to always they're very responsive.They come quickly when asked to do an ethical consult and they're happy to have a meeting with the family.
25:10
They're happy to meet with the clinicians.They explain in a in a very clear and concise way what you know the ethical issues are and what should be forward.They're very, they're very helpful when people want to invoke our non beneficial and futile care policy in that, you know, they'll, they'll, they'll walk people, they'll walk a clinician who's never done it before through all the steps in getting to, for example, changing a full code to ADNR in, in a futile setting, for example, for CPR, because that's part of our futile care policy.
25:51
And there's a very clear process and they know it extremely well.So they're very helpful to the clinicians in doing so.And anyone at our hospital can order an ethics consult.So nurses can order an ethics consult and occasionally clinicians will be upset that somebody you know not be attending ask for an ethics consult.
26:14
And then when that happens, I'll sometimes call up the clinician and explain that anyone can can recommend an ethics consult and order one.And I'll often also go through how they can support the clinician.If you know if the clinician's dead set against it, we're not going to overrule them.
26:32
But often with conversation, you know they're willing to change their minds.Just along the lines, to return to one of the examples Barbara mentioned before, you know, we had at that younger patient with AML and was intermittently he's sort of non compliant in a way that was disrupting her own care and the effectiveness of it.
26:54
Very treatable form of cancer and she was going to cause her own death with these refusals.She is judged to have capacity and the, you know, and able to refuse.And she wasn't refusing outright, just sort of intermittently.And it was unclear what she meant and or what what she wanted.Her parents were really permissive of her problematic behavior.
27:12
It was a really tough case because she was basically decompensating in that bed over a period of months, getting sicker in all sorts of ways, and yet seemed said she wanted treatment and then would interfere with it.A a a really tough case.And so we, you know, ethics was consulted on that case multiple times.
27:32
What solved it was when we got that interdisciplinary complex care committee involved with high level people who could bring a lot of thought but also resources to that.And just to describe the scene to you for, because I think people that do ethics consultation will be fascinated to see or to, to imagine what this was like when we, the complex care committee authored this letter to the patient saying that if you refuse any more care, we're going to respect that because you have capacity, but we're also going to discharge you from this hospital because we cannot effectively care for you if you're going to intermittently refuse these things.
28:05
She had been served on a very high, high cost treatment that then she was starting to refuse.And it was, that was going to be net harmful to her if she did that.And so we, we had this, a letter authored by the committee, signed by Barbara, but it wasn't just a letter from Barbara.
28:22
Barbara went up to the floor with Mark Navin and I and we with the psychiatrist, with a nurse, with the oncologist, and we we all walked down the hall together and into that patient's room.And Barbara very compassionately explained what the letter said to the patient.
28:39
She actually told some, you know, empathize with the patient quite a bit about following medical advice.And it was a highly effective intervention that was multidisciplinary, came from the top, that ethics was there to support.
28:55
But it, it wouldn't have happened if it hadn't been for that kind of administrative support.And I'm not exaggerating when I say that it saved that woman's life.I see why you wanted to bring this, Jason, because like Barbara, having your back like that, Dan, having your back like that is, is so huge.
29:12
I worked at a hospital once where we had a patient and this was years before I got there.A patient had been declared brain dead and the all the clinicians wanted to remove all treatment as you would for a dead patient and got to the place where they figured it out loud.They used the the futility policy, although I don't think they needed to because again, this patient was dead and administration would not back them up in removing the ventilator and other kinds of medical treatments.
29:37
And every time we tried to then invoke our non beneficial treatment policy, all everybody would say they didn't back me up 10 years ago when we had a dead patient.They're not going to back me up now.And this was the mythos.This is like the lore in the background of.So the policy would never work because one time administration wouldn't back up what seems like a really reasonable route to overriding a family who didn't want care removed for their dead loved one.
30:02
And the administration wouldn't let the clinicians remove that treatment.And then we just couldn't ever use the policy because they just refuse to use it because of this background.So having the support of of the people in your institution is just so important to making this work.And then having somebody so responsive as Barbara saying, you know, I'll talk to the clinician who didn't want the ethics council ordered.
30:23
That's huge.I've never heard of any administrator doing that before.It's usually the clinical ethicist who's having to push like here, here's what our policy is, here's how we do ethics consults, and that's a hard place to be in.So having somebody in upper administration backing you up all the time and being responsive in the situation is so crucial.
30:40
It's been an amazing environment to do what we do.It really has.Over on that side of the state, you guys are well, well provisioned with really high quality ethicists there to help support you.So Wasserman, Navin Brummett, these individuals bring not just a, a robust expertise, which I think a lot of clinical ethicists can bring, but also some, you know, diplomacy skills, be able to provide practical, real advice in ways that don't offend and ostracize people, but also individuals who really care.
31:12
And I think that that is increasingly rare in the world that there are people who really at, at their, at their heart, they care about what's good and what's right and what's helpful for people.So.I think Barbara and I both understand what how, how fortunate we are indeed.And, and we are indeed quite grateful to have Jason and his team and the impact that they have and the improvement we're seeing because of it.
31:36
We realize how fortunate indeed we are.We're so grateful for you all to come this morning and talk about all the great work that you're doing.And I hope and expect that it will inspire a lot more work and clinical ethics that works well with administration.So thanks for being here this morning.Yeah.Thanks so much.Thanks for tuning into this episode of Bioethics for the People.
31:55
We can't do it alone.So a huge shout out to Christopher Wright for creating our theme music and to Darian Golden Stall for designing our logo and all of the artwork.If you're into what we're doing, give us a rating on Apple Podcasts, Spotify, Amazon Music.
32:12
Or wherever you listen.And if you're really into what we're doing, head over to bioethicsforthepeople.com to snag some merch.
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In this episode, Stephanie Van Slyke helps us to understand DNR orders and her success in helping clinical staff understand what they mean.
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In this episode Steven Squires describes an intervention into ethics education that has taken off!
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In this episode we discuss another success story with Dr. Jennifer Bell who helped her medical center think about how to ration scarce CAR-T Cell cancer treatments.
Transcript
0:00
Welcome to this episode of Bioethics for the People, the most popular bioethics podcast on the planet according to Grandma Nancy.I'm joined by my Co host Doctor Devin Stahl, who dutifully completes the same 5 New York Times puzzles every single day.
0:17
And I'm joined by my Co host Doctor Tyler Gibb, who if he weren't here right now, would probably be golfing.All right, Tyler, so we have another success story to share today from a fellow Canadian.Yes, I love Canadians, of all the nationalities, they're my favorite.
0:37
Have you ever, I don't think you even talked about this in the podcast we did about you, Tyler, is that you're Canadian?Well, kind of Canadian.I was born there.I can have dual citizenship if I ever fill out the paperwork.Oh, you've never filled out the paperwork?No, it's like $125.00 fee and I've never never actually filled it out, but.
0:55
That says something about your like extreme optimism about our political situation that you've never like in the back of your mind, Go said maybe Canada might not be such a bad choice for me.Yeah, maybe this year will be the difference maker though.We'll see.OK, so we've got a Canadian with us.
1:10
Well, I'm actually dual citizen.Yes, dual citizens are the best.I grew up in Georgia and now I live in Toronto, so.All right, so we've got Jennifer Bell with us, who's a senior bioethicist up north of the border, and we'll let her introduce herself.
1:27
Yeah, well, I I already told you more about me than I think I tell the average person.So I am.I won't start from birth.I'm currently a senior bioethicist in Toronto, ON and Director of Bioethics Research.I'm at the University Health Network and I'm affiliated with the University of Toronto.
1:47
Very cool.So, Jen, what does your day-to-day look like?Well, I mean, actually it's changed a little bit because I just was awarded a fellowship actually in AI and compassionate healthcare, but previous to that, which I just started a couple of weeks ago.So I've been seconded to that and it's a research fellowship, but, but prior to that my, my day was very clinically oriented.
2:10
I mean, I provide clinical, organizational research and policy and education ethics across our organization.I primarily support Princess Margaret, which is our cancer hospital.But organizationally, I do a lot of work for the entire organization as it goes.
2:28
So, you know, day-to-day it's, I mean, as those of you who work in healthcare settings and our ethicists there and you're sort of beholden to what kinds of consults and questions come up and you can never really anticipate what those might be.So that's sort of exciting, but also a bit daunting because you know, you're called on to be sort of have knowledge about all these various areas.
2:51
But it's sort of a generalist in a sense, at this hospital at least, because I, again, serve a larger population than just the cancer system.So it could look very different depending on the day.But generally, I will be responding to a clinical consult, a bedside consult.
3:09
Maybe there's a policy coming through that needs an ethics perspective.Right now, we're in the midst of creating sort of AI protocols and procedures.And so there's a lot of opportunity there for ethics input on that.So, I mean, it really varies, yeah.And I know that Tyler has experience with this too, but I've been part of hospital systems that get like 1 consult a year, and then I've been part of ones that get more like 1 consult a day.
3:36
My guess is you're getting even more than that.So what is your typical load like?How often are you being called to consult?Yeah.Well, I should preface this.I'm not a sole bioethicist working in this network.Actually one of five others.So there's six of us.We're not all full time.
3:52
So me in particular, I have 3 days that I devote to practicing ethics in the healthcare in our, in our healthcare network, but I'm also paid to do research.I have a nice dual role, which is it's hard to come by, at least in Canada.
4:08
I don't know how frequent you have these opportunities in the States, but so my day, my week is actually split into normally it's changed a bit now because I've started this fellowship, but before this it was three days clinical organizational research ethics practice and then two days I had devoted to actually conducting research and bioethics.
4:28
I would say that's incredibly unusual.That is a lot of time for research.That is really cool.Yeah, yeah.And it's not grant funded either.So it's it is a permanent sort of part time research position, a full position in its entirety, but the research side is actually well as guaranteed as you can be.
4:47
That's cool.One of the topics that we're covering on this kind of series group of episodes is success stories.What we want to do is highlight some of the good work that clinical ethicists are doing.Number one, because they, I think clinical ethics and being an employed clinical ethicist is a fairly unusual type of position.
5:06
Most people don't know that this position exists, but it's easy to envision, you know, the worst case scenario or really terrible cases where an ethicist is useful.But sometimes those get sad and those get heavy.Those talking about those cases all the time.
5:22
So we wanted to talk about success stories.And so you have a success story that you are going to share with us.Yeah, Yeah, I do.And thanks.And it just, it just dawned on me that I didn't actually answer Devin's question about how many consoles we get.I I was leading into it and then and then digressed.
5:40
But as a snapshot, because we have, you know, almost 6 at the system varying kind of responsibilities to ethics within our service, we have around 350 consults a year.I don't know how to make sense of that necessarily.I mean, that's one of the questions of our, of our profession, of our discipline is how do you benchmark this?
6:00
But but yeah, we are a busy service, a very busy service.And actually the success story stems from an organizational ethics consults.So actually most of my work has tended to be at the Cancer Center and it's tended to be organizational in nature.
6:16
I think that might be because I'm there three days out of five and I'm just not, I'm not as present on, on the units walking around or participating in rounds as much as maybe I would be if I were there five days.I mean, I think that might be some reason.
6:32
But I have also just had a lot of uptake in terms of organizational ethics issues and leadership has brought me on to some of these issues and it's just kind of propelled from there.So the success story that I wanted to share with you all is an organizational, I'd say organizational ethics success story in the sense of success of being involved as an emphasis being included embedded I think in the process and the questions.
6:59
It was an important and still is actually an important issue that we're working through at the Cancer Center that, but that's the setup.It might be helpful to some of our listeners who might not be as familiar with the work of clinical ethicists to just describe briefly the difference between sort of a clinical ethics consult and an organizational consult.
7:19
I generally understand those as a clinical would more come from a physician or someone on the healthcare team, maybe even a patient, other family members saying like what's happening here doesn't seem quite right or there's an ethical dilemma I'm seeing at bedside versus an organizational question might be more like the process itself that we have some sort of policy that we have doesn't seem to be working for us.
7:40
So we need a higher level console that says we need to think about how our systems are running.Is that how you make that distinction?Yeah.I think that's a really, that's a really helpful distinction.I would have made something similar, but maybe not as eloquent.
7:56
Yeah, clinical ethics is more about direct patient care.We got consulted by all those parties that you just mentioned.Many people don't know, especially patients or public members that they, at least in our service, they are free to contact us for a consult.They don't need to pay for it.
8:12
So that's something we're always trying to strive for in our services to let people know that they can contact us, doesn't have to be the healthcare team contacting us.And then organizational, yes, just as you just described, I'm often involved in policy guidelines, anything that would sort of touch a systems level of how a practice might operate or a program might function that has ethical components to it.
8:39
I mean, lots of ethicists I know have been involved, for example, in informed consent policies in their institution.So that's a, a pretty typical 1.And I know, you know, we talk sometimes about these hybrid cases.My colleague Sally Bean has a great article describing hybrid cases where you might have a clinical ethics consult, a patient, a consult involving direct patient care.
9:02
I'll take an example from my own practice.We had a patient that was uninsured in Canada.We have public insurance, but it's only available to those people who have status in Canada, that being immigration status.And that's how we define uninsured or insured government provided insurance.
9:21
And so there's going to be some folks without that eligibility and don't have the access.So we've had many consults that arise during direct patient care about whether we should or should not, the healthcare team should or should not provide care to certain patients who are uninsured.And as a result, a long time ago, I developed with senior leadership a policy around how the hospital ought to approach this issue.
9:43
So that's a good example, sort of a hybrid case where an organizational ethics issue is informed by a clinical ethics case.Yeah, in my experience, that's almost always how they go is that somebody identified something on the bedside that then needed a policy to make sense of, like how we would think about future cases.
10:01
So how did this case or this success story, how did it land on your desk?So for the success story, I have to actually go back several years.This was pre COVID when it landed on my desk, so to speak.So it was 2019 and I have been quite involved in the self therapy working groups at Princess Margaret's.
10:25
So like prior to this, the stem cell transplant program and we had actually written a paper and developed a process around prioritizing patients to stem cell therapies.And so I knew this group very well.And the director of the cell therapy, the cell effector therapy program approached me basically and said, look, we have this cellular therapy, it's called Karti cell therapy.
10:53
This is a kind of immunotherapy for cancer where you take your own immune cells, you engineer them and make them better able to attack cancer.This is a, you know, highly specialized therapy.It's very resource incentive.
11:10
It's very expensive and it's only performed at specialized centers.Princess Margaret being one of those very few centers in Canada, and I know in the United States there's also select centers that apply.Not every center has a cell therapy or CAR T cell therapy program.So she approached me actually and said, look, I'm really concerned about the way that we're currently allocating very scarce spots of this CAR T cell therapy to patients.
11:38
We come together currently, we discuss the patients that are eligible, but you know, I'm worried that it's not.It could be better.Like the process for deciding which patients should get the next slot.This process could be better.She was worried about the squeaky wheel effect where a patient's physician might just be more vocal about a patient and it might just that patient may rise above the others then in the decision making.
12:03
And she just wanted some guidance and transparency and really an ethical framework around this process to support it.That is like when we teach about the first dialysis committee that had to decide.So they were like hundreds of patients, thousands probably around the country who and but like 3 dialysis machines and the physician says Yikes, I can't just make all these decisions on my own.
12:26
I need an Ethics Committee.And in that case, they, I think we've talked about this on the podcast before, found like representatives from the community to do this who ultimately made some pretty biased decisions.But now we have these professional ethicists like yourself presumably have some expertise in this and now you're being tapped to do it.
12:43
So it's like a different model then.It'd be great to sort of compare this at some level.You should I'm, I'm always good at telling people what they should be writing.Do a comparison of like those kind of original committees that were formed.And and this like has a similar sort of problem.But now we have a new profession that's that is there to address it.
13:02
And so can we do better than the original dialysis committee that what they used to call the God committee?Yes.So this, as you say, this is not a new ethical problem.The clinical context had changed.We're not talking about dialysis anymore, but we're, we're and we're not talking about transplant because we know we still have this in, in solid organ transplants where the organs are extremely scarce.
13:25
This is a bit different.This is our T cell therapy is it's not, it's not an organ, it's it's a product.It's a product that's made from a patient's own cells.It's engineered.It's a little bit different.It's not an absolute scarcity.I suppose that's the difference.
13:41
There are other things that make this product scarce or limited.So there's capacity challenges, for example, manufacturing challenges.It takes a lot of people to be able to make this therapy available.So I, I can get into the various challenges if you wanted, but suffice to say that this is a therapy that is very, very, very intensive, complex and and only performed at very limited centers.
14:12
And presumably very expensive.Yes, very expensive.So I think, I mean the last number I heard was it's $500,000 a product and I'm not sure if that actually includes all of the bedtime.Sometimes these patients need to go to the ICU.
14:29
So I think that's an average, but it could, I think it could be more than that given all the needs that sometimes go along with it.So incredibly resource intensive type of therapy.Remind me, what type of cancer is this treating or or what types of cancer is this useful for?
14:48
So it's, it's been approved for blood cancers mostly, so leukemia, lymphoma cancers and it's been used mostly third line.So these are, these are patients who have tried several lines of therapy already and they're now on maybe their third line and nothing else has worked.
15:09
And CAR T, they are eligible for CAR T at that stage.It's going to be available for multiple myeloma.In fact, the product may have already come out two months ago here in Canada and may be more available in the States earlier, but it's the blood cancers.However, I will say that in clinical trials, CAR T's being explored for solid tumors as well.
15:30
It's sort of lots of people are very optimistic about CAR T cell therapy, but it just hasn't shown yet to my understanding, as great of benefit or usefulness in solid tumors as it has in blood cancers.Janet, sounds like you know a lot about cancer.
15:46
I mean, it makes sense that you're in the you're in the cancer hospital mostly.But for your kind of work and for what you are tasked to do with thinking about resource allocation, how important was it that you understand cancer, like the pathophysiology of cancer, The, you know, sort of the mechanisms of cancer, the science of cancer?
16:05
How much of that is really important for you to be able to know in order for you to think about resource allocation of this chemotherapy or this immunotherapy?Oh my gosh.I think this is almost an existential question.Yeah, Because I, I struggle with this.I want to know as much as I can.
16:22
I try to learn as much as I can.It's, I mean, obviously it's beyond me.Like this field is just so fast-paced, so complex.I went to a conference last year in immunotherapy, the bio can RX conference in Canada.It's, it's really pushing the boundaries of our T cell science and just sitting there to look at all, all the various permutations of vectors they're exploring like ways to get the cell into the engineered cell back into the cell and, and what should carry it in there.
16:50
Like it's just beyond me.So I, I try and just have a basic level of understanding at least to be able to converse with people and ask good questions.But you really, I really rely on my colleagues to, to fill that medical gap.
17:10
Obviously I'm not trained in medicine so doesn't come easy.So you were approached to help develop this allocation process for this particular expensive, high resource intensive cancer therapy.So how, how do you even approach the question?
17:26
Like how do you even get started on something like this?As as you may or may not know, you know, I come from the background and philosophy.And so I, you know, I've studied John Rawls, I've studied different models of justice in theories.
17:42
And but when it comes to actual sort of clinical application of some of these series there, it's difficult.So when it comes to problems of distributive justice.So this is problems of justice where demand outstrips supply and decisions need to be made about how to allocate.
18:01
There are some raining sort of philosophical approaches.So you could take a utilitarian approach, which would just mean trying to maximize benefits to the majority of people.When you look at the literature, because you as an ethicist, part of I, I see part of my job is going to the literature to see what's been tried, to familiarize myself with the theories and a possible approaches and to do some evaluation on my own about what might be most applicable to the situation that I've been consulted about.
18:34
But generally, I mean, utilitarian approaches have been criticized in problems of distributive justice because you still land up with or you still end up with discussions around, well, what counts as maximizing benefit?What is benefit?And then we get into discussions or disagreements potentially about what benefit might mean.
18:54
Is it elongation of life?Is it quality of life?You know, there will be disagreements.And then obviously utilitarianism as a theory fails to consider properly or appropriately the needs of the less well off or the minority because it's very much concerned with what the majority is owed.
19:12
The other approach in the literature for distributive justice problems is an egalitarian approach where everyone deserves equal based on personhood, deserves equal amount of resources distributed to them.But obviously the first problem there in this situation is that there isn't enough resources to go around to everyone.
19:32
And so we can't give everyone equally the amount that they deserve.We can't give everyone a slot for car T because we are very limited in car T slots.And that's why we have this problem where we need to justify why one person should get it or be prioritized over somebody else.
19:50
Or could somebody wait and this person get it now or, or are they not fit to wait?So egalitarian approaches also sort of fail the test.And so in the literature, of course, there's recognition, I guess, of these limitations of these two approaches to distributive justice.
20:07
And somebody very smart developed an accountability for reasonableness model.That's right, we don't remember anybody's names.So that you can edit this.No, there are some people who are like so good about saying this person thought this and wrote this or like lawyers, sometimes they're really good about saying like this versus this case and this court said, but we are not like that.
20:30
And yeah, so somebody smart said something smart, right?You are my people then.Yeah.So they developed accountability for reasonableness, which is really just a process for making decisions.So it it outlines various principles that ought to be met in a decision making process where reasonable people disagree.
20:55
And so we already know reasonable people are going to disagree.In this situation, we're going to have debates about should this person go or should that person go.And so this process, accountability for reasonableness sets out some criteria that a decision making process ought to meet in order to be considered fair.
21:13
There are several stages in application.So as an ethicist, I came in then and suggested we use this approach, accountability for reasonableness to tackle the ethical issue of prioritization of patients to CAR T cell therapy given the disagreement and given the scarcity of CAR T cell therapy.
21:33
So this reasonableness account is published in the literature and and why did you think that this would be the best approach?I mean, why not just lean into utilitarianism like that?Seems like the most cut and dry to me.Yeah, I mean, we did have discussions and so in our process, you know, we invited different parties.
21:50
So part of accountability for reasonableness to go back to your diet to tell us this example, one question might be, well, who was at the table or at the where?Was it the right people at the table?And if, you know, a certain group was left out, could that have been a factor in arriving at what we would now consider a skewed outputs or decisions made, You know, that we would now reflect on and say, well, maybe this wasn't quite right.
22:15
And so part of the process for accountability, for reasonableness, I'll just say A for R is to and invite relevant stakeholders.Of course, then you're then you're tasked with the question, well, who, who is relevant here?And very helpfully or somewhat not at all helpfully, I think the guidance is will anyone that will be impacted by the decision.
22:41
OK, not helpful in our sense.I mean, CAR T cell therapy involves a lot of people.I mentioned it's very complex.You know, you have to take cells from a person's body.You have to, it's called apheresis, where you you actually have a bed space as a patient.
22:58
You would go to that bed space and have your white blood cells in this case withdrawn from your arm probably at the catheter.So this is a process that needs to happen.Those cells will be extracted.So you need a local cell processing facility to extract and keep and freeze those cells.
23:17
All of this is required.It's overseen by accreditation bodies.So you need to have the trained staff to be able to do this and handle the cells appropriately.Quality is very, very important in managing in this process.So you need to have quality and auditing process and like it takes a lot actually to do this.
23:38
And then once you have the cells you can, you need to distribute it to the manufacturer.So they need to be transported to the manufacturer in Canada.That means transporting it to a site in the United States.So we don't have a manufacturing site, apparently one that's for standard of care up and running in Canada.
23:55
So we send it to the state and then you wait four to six weeks for them to engineer the cell and then and they transport it back to us and then we keep it in our cell processing facility and then the patient comes in and we infuse the cell back into the patient.So this is just to illustrate that it's a very, it's a very complex process.
24:14
There's a lot of people involved.There's cell coordinators, there's nurses, there's obviously the oncologist, there's patients, there's their family members, there's, you know, bioethicists, there was myself, there's leadership that overseas a lot of this part T cell therapy, I should also mention can touch other areas of the hospital.
24:34
So again, some of the side effects of part T cell therapy can be severe.So some of these patients might experience cytokine release syndrome, which is like an influx of your immune cells sort of sort of exploding in your body, going haywire as a result.
24:51
And it needs to be managed and it's very severe.You can develop neurotoxicities based on this.It can be very harmful and it's best managed in an ICU by very trained staff that know how to manage this.So, so now you can see right there, there's other people that are impacted by CAR T cells.
25:11
So bringing in potentially the viewpoints and considerations of the ICU of our chemotherapy units, of our apheresis unit.So there was a lot of people to consider in this case to bring together and we did have quite a large working group when we began this project of about 35 people.
25:30
That's too many cooks in the kitchen.Not all of them came all at once, but to get the point about utilitarianism, I didn't forget it right there.There's I mean, there's so many people and but there's a lot of difference of opinion then about how exactly this, how do you define and understand benefit in this patient population?
25:52
And we have lots of discussions around who would be most likely to benefit from CAR T cell therapy.And this was where I found it very interesting as a non medical person because the discussion came out around, well, you know, someone is someone who has greater disease progression may have a greater chance of benefit of CAR T cell therapy because their disease is progressing.
26:18
It's their last line.They really need this.It's their only option.And the disease is, it is advanced, so they have a greater opportunity to benefit because there's no other options for them and they can't wait very long because their disease is progressing.But then others would say, well, if their disease is progressing, then they may actually not do so well with this therapy.
26:39
It may be too far gone or they may be too sick, or they may have other comorbidities.So we should be allocating this to someone who is sort of less sick in that sense they they could derive more benefit from this.What strikes me about the case, the problem that you're working is that the same analysis and the same issues come up whenever we're talking about scarce resources.
27:03
And so we could be talking about ventilators during Kovid, we could be talking about solid organ transplantation, we could be talking about something as simple as diabetes medication, right?So whenever there's a scarcity of resources, which there always is some sort of scarcity, some sort of limitation, then we have to make really hard decisions about who gets what.
27:23
And there's a letter of different ways of approaching it.And I think people who aren't familiar with these types of cases mistakenly assume that it's fairly simple that we just, you know, list people and they've got criteria and then we, whoever deserves it, whatever that means, gets that organ or that medication or that resource or whatever.
27:44
But it's so it's so much more complicated and nuanced.And when I'm teaching students about allocation of scarce resources, if there's almost always a point when they start going through the problem set or the the case and then they have to stop and be like, wait a second, this is way more complicated than I Then then we started thinking this was.
28:02
So I think that's part of the benefit of having an ethicist in the room is like, we anticipate complexity probably better than most people.But yeah, it sounds like you're struggling with the same thing.And if it's not immediately complex, we can show how it is.Yeah, We're good at making it seem really complex.
28:19
It immediately kind of like struck me as like very similar to organ donation.But I think Tyler's right that a lot of scarce resources like this.But I think what I am struggling with is not that it's easy with organ donation, but we do have some sense of we've been doing organ donation long enough where we can sense like if somebody is too far gone to receive the benefit of the organ.
28:40
But with COVID, it was really unclear.Like we were using tools to help us understand, like how people, how close people were to death such that maybe treatment wouldn't help them.But we were really unclear about it because COVID was so new.It was such a novel disease that we were really unsure if our tools and our measurements were correct.
29:02
So is is this therapy somewhere in between there, like we have some evidence of its effectiveness for certain populations depending on disease progression?Or is it more like COVID where it's just so brand new that we're not certain of our own measurements?So I would say that it's more leaning towards the COVID scenario and obviously not entirely.
29:21
A lot of the studies that the approvals have been based upon the FDA, Health Canada, European nations have based approvals on our early phase trials.So phase one, phase two trials.The long term effects of this therapy in this in these populations is, is not well known.
29:42
We're starting to know a little bit more, but it's there's a lot of uncertainty.There's also a lot of uncertainty around predicting which patients will do well exactly.So there's a lot of medical uncertainty.They have scales.Frailty is seen as maybe a significant factor in considering whether someone will do well comorbidities.
30:00
But I've witnessed my medical colleagues struggle with this around making predictions or knowing or having knowledge about which patients will do better.And a lot of their research in this space, or not a lot, but a stream of research in this space is about trying to figure out which patients will do better on this therapy than others.
30:21
That makes the ethics really complex too, because if you don't have good facts about who's going to benefit, then you really need some other.I see now why you're saying utilitarianism can't work here because we just don't have enough facts about outcomes, so we need some other kind of model.And I might touch on one criteria that came up because it was interesting discussion in our group and it's come up in other allocation decisions before and that is age.
30:46
So did you allocate a scarce resource based on age?And this came up in our discussion as well.And you know, to the to the point about not having all the facts, there isn't much research to show that age is predictive or correlated with outcomes in car T cell therapy.
31:08
There isn't good rationale for leaning on age as a determining factor or criterion to consider in allocating patients.So in our working group, we had a lot of discussion and patients were included in our working group and they were very adamant that age should not be a criterion if we cannot justify it based on sound evidence, medical evidence.
31:35
And we had disagreement about whether we actually had that sound medical evidence.And in the end, we as a group decided we did not.So age was excluded from our list of factors to consider when prioritizing patients.And I know that age is a very contentious factor in discussions of other resource allocation discussions.
31:55
Yeah, because age can either age as a criterion doesn't tell us whether being older is an advantage or being younger is an advantage.And also it's interesting.I think it's important that you tried to link your decision about whether or not age is a criteria to evidence, because a lot of evidence is based upon all evidence is based upon research and the research is based upon protocols.
32:19
And there are exclusion criteria, probably based upon age, in the underlying research as well, which also complicates it.Yeah, but can't we say like a 99 year old?OK, maybe it will or won't work for them, but gosh, how many years did they have left if they get therapy or not?
32:35
I mean, they're, I wouldn't say that, of course I love old people.But I have heard people say that like, you know, even if we don't have evidence that it'll help or hurt based on age, just by nature of like human lifespan, if we're giving therapy scarce resources to people who are very, very old, they just won't derive the same benefit as somebody who's very young.
32:53
The general population feels that way.But I agree with you that it shouldn't be good criteria.Yeah.And especially in the context of Car T, when people are this sick, if you take a 45 year old person who's that end of line cancer treatment, this is their last sort of shot, but they have a whole host of comorbidities associated with their illness.
33:16
Very they have a not good medical gestalt here is they could be harmed by CAR T and actually not derive any benefit versus obviously a 99 year old who's very, very fit and otherwise healthy.
33:33
I mean, this is a very a little bit far fetched scenario, but I mean, you will see quite a significant age difference in some of the candidates.And I think the rationale is that it needs to be based on the underlying condition.I mean, we're all going to die, but there's certain things about, you know, frailty or having other conditions that make us more vulnerable to, to not doing so well other than relying on age.
33:58
Because if you rely on age to differentiate the 99 year old, then you're going to have to rely on that threshold to make differences of other age groups as well.And I'm not sure that that would stand up.Yeah.So making a choice between a 99 year old and a 19 year old may be easy, but making a choice between a 55 year old and a 65 year old, I mean, that's where it really gets into something more problematic if you don't have clear justification for it.
34:22
And I'd say the other interesting very contentious area that we engaged our working group in discussion about and had very heated discussion about was psychosocial factors.And this comes up in organ transplant as well.CAR T cell therapy, it's infused in hospital, but it requires a lot of a caregiver.
34:42
So patients it's, I believe it's actually mandatory to have a caregiver to be eligible for CAR T.So we might worry about those patients obviously who lack, who are more isolated, who don't have a caregiver, maybe don't have the financial means to hire somebody to care for them while they're going through Car T and then the time spent at home monitoring their symptoms for many days afterwards.
35:07
A caregiver is very essential for good outcomes for CAR T, good medical outcomes for CAR T So we had a discussion around, well, what would happen if a patient didn't have a caregiver?Should they then be excluded from parting a slot?And our overwhelming consensus from our group was this should not be an exclusionary criterion.
35:28
Lacking a caregiver shouldn't mean that you don't have access to CAR T Rather what it should mean is signal that we need a lot of social support around this person and to find ways to enable them to have the the caregiving support or some social resources to enable them to get there.
35:47
You know, you have to have a very well resourced center with social work with in our case, we also have some philanthropic funding to be able to house patients in a hotel or some supports.Or we had an agreement with another care center that enabled some of our very unstably housed patients to go to receive aftercare of Car T so they could have that follow up care.
36:13
So it was a signal in our process to identify patients who lacked a caregiver, not to exclude them, but to then wrap around support for them.But this is similar for for transplant as well.As I understand it's that there needs to be some demonstration of a caregiver and obviously that's tied to socioeconomic status and other.
36:32
I'm really glad you made that decision.I'm like really heartened by the, the justice framework that you're using here.But it also required a lot of, like you said, supports from the health system that you work in.All right, So you've gotten together the stakeholders, you've thought about criteria.What's the next step then?
36:48
I mean, the bulk of this process is engagement and discussion really.So you're bringing together all these differing viewpoints, these differing values considerations.You're finding areas of overlap and trying to signal to people as an emphasis, as a facilitator of this process, finding ways that people are actually speaking the same language, even though they may seem at first to be in disagreement.
37:17
They're you're asking questions to elaborate on certain reasons why certain people think that aid should or should not be a factor.Or can you tell me why?So the process of actually getting people together to identify what are relevant criteria for the decision was the bulk of the engagement and it took place.
37:38
We were, we were interrupted by COVID.So there was.Like we all were.And COVID put other other pressures as it did for everything, other pressures on the car T cell process.You know, we had a lot of exodus of healthcare workers.We had bed space that was reallocated.
37:56
You know, there are drugs that we use in car T cell therapy that were then used actually for COVID, the viral vectors.So the thing the the thing that helps the engineered cell go back into the cell when it's when the white blood cells are taken from the patient and engineered at the manufacturing facility, they engineer the T cell and reinfuse them.
38:18
They use a viral vector to get that, to get the car T reinfused into the cell.Those viral vectors were being used in the COVID vaccine.They were also being used in other gene therapies.And there was actually a shortage during COVID for that.So there there was pressure.
38:36
You know, I'm in Canada, it's a publicly funded health system.We have scarcity based on just finite resources.But there was also this manufacturing limitation that hit the globe for car T US included.Everyone was hit by this viral vector shortage because of COVID.So there were many ways that COVID interrupted our process.
38:53
So when when you were developing your process, you didn't put in a contingency plan for a global pandemic that creates resource scarcity across the entire globe?You will in the future, I'm sure.Seems short sighted.We are all learning to incorporate the unexpected.
39:09
But I think that also highlights the like the contingent nature of a lot of ethics clip clinical ethics work, right?And so it's very uncommon, I think for a really competent, excellent clinical ethicists to say, this is the right thing, right?This is our process, this is how we're going to do things.
39:26
It's morally the case of here, here's a couple of options.And if this, then this is what we should do, right?And if this happens, then this is what we should do.And even in our policies and processes, we we get that if then type of approach.I think that that's common for really good clinical ethics is to be able to identify what are the ifs and what are the thens of what we're dealing with.
39:49
Although the global pandemic may be threw a sulfur a loop.And I think also another thing I said before that I studied philosophy when when I was doing my degrees, the other thing that I've struggled with in actually teaching other ethicists to do this strange job that we do.
40:07
Is that you can never apply theory in the way that theory intended.You know, it's this is messy real world.And that may seem obvious to many people, but when you're an idealist and you've studied some of these theories, you know, it's a little bit hard to accept.
40:25
I think when you come in, you know, out the other end and you're actually practicing ethics in, in the clinical space.So I, I would be the last one to say that, you know, we followed this process.They for our accountability for reasonableness to a perfect TI think that there there is always a, a good, you know, pause for reflection about what we could do better.
40:47
So for example, I think the discussion that we had and the, the people we involved in the discussion was very strong.We involved patients, We did a separate focus groups with patients.I think that they were engaged actually very well and their thoughts were heard on many points, not just the age criterion, but there were, there were other points that they made.
41:07
Adherence was once a criterion for patient prioritization.If a patient was seen as unlikely to adhere to the to the protocol of CAR T, which again is is very comprehensive, they have to commit to a lot of appointments and following, you know, drug regimes and so on and so forth.
41:26
Early on that was thought to be a factor.Patients vetoed that almost immediately.Adherence should not be a reason to exclude anyone from CAR T.They emphasize that we need to look at the reason for non adherence.You know, is it the case because a mother of three children can't actually attend her appointments because she's got competing childcare demands and can't make it to the center because she lacks a car?
41:51
Yes, we ought to attend to those complexities of this particular patient's experience.So adherence was actually one of those things that was thrown out very early on and that was because primarily of the patient voice.So Jen, I love hearing about all the particularities of what the group came to, and I just wonder how you think about your role and the success of what you're doing from the ethics perspective.
42:17
I hope that this story is is a successful example of an embedded ethicist facilitating a process that was engaging for everyone and that helped to develop a transparent and hopefully fair framework for allocating a scarce resource.
42:41
I think the benefit of having a bioethicist involved here is that, you know, I, I don't think of myself as a neutral third party.I have my own perspectives and values and beliefs as an ethicist.I come from a philosophical paradigm.
42:58
I come from a feminist philosophical paradigm.I mean, I have, I have to do work of reflexivity as well in my practice, in my ethics practice.But you know, I do think that there is a stance that I can take by offering a tool, which is accountability for reasonableness in this case, to a clinical team that was struggling with a decision, where they were not only struggling with a decision, they wanted to do the right thing, but they're also mired in their own power hierarchies of medical power hierarchies.
43:33
They needed somebody to be able to come in and level the playing field in a sense, to say, well, that coordinator's voice, that patient's voice is just as important as the medical director's voice.And kudos to the medical director for bringing me in and being open to the process because, you know, the practice of ethics is really reliant for good or I'll, I think on relationships that can place us in difficult situations sometimes.
44:05
But a for R is a, again, a process where you're not asserting a certain position upfront.You're really trying to come to compromises, and again, that may be coming to decisions that the group has thought is justified, where you as an individual may still have reservations.
44:26
But hopefully through dialogue and an empowered engagement, you can reach a solution that people can say it's OK, we understand, even though we may not fully agree, we understand.And I think an ethicist is just very crucial and important in that process.
44:44
Jen, I think that your your institution is very lucky to have you there and also it is wise in using your skills to help benefit this process.It So what what you're talking about reminds me of something that my my mentor at UCLA, Doctor Hines, said, that a good clinical ethicist is able to help people find their moral voice, but then also be able to hear the moral voice of other people.
45:08
Yeah, that's lovely.I, I, I love that.I might use that.Yeah, feel, he loves it when I steal his stuff, so feel free to use it.So, Jen, thank you so much for sharing that story.I think resource allocation is one of those topics where we sort of talked about it before COVID, but man, it has become just an obviously really important discussion and it sounds like you came up with a really great framework for working through it at your center.
45:34
Yeah.Thanks so much for the opportunity.It was quite painless to do this so.That's what we like.That's going to be a new tagline.Quite painless.Thanks for listening to this episode of Bioethics for the People.We can't do it alone.Thanks to Christopher Wright for writing and producing our theme song.
45:52
Darian Golden Stall for designing our logo and all the artwork you don't see because this is a podcast.If you like us, please rate us on Apple Podcasts, Spotify, Amazon, or wherever you listen to podcasts.And if you love us, visit our website bioethicsforthepeople.com to snag some of our merch.
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In this episode we do a deep dive into the work and life of our co-host Dr. Tyler Gibb
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You asked for it, so here it is… the “Who is Dr. Stahl” episode. We do a deep dive into the path that brought Devan to where she is today.
How did she first get interested in Bioethics? Who were some of her most influential mentors? What is she currently working on?
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In this episode Dr. Tim Lahey describes how he helped his institution curb violence against health care professionals.
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In this episode, Dr. Becket Gremmels discusses a success story involving a pregnant teenager and her parents.
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In this episode, Stefano Mugnaini shares a success story about how he was able to work with wardens on behalf of incarcerated patients.
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Coming Soon!!
Transcript
0:07
Devin, we're back season. 6 Tyler, we're back season six.Can you believe it?No, I I can't believe we're still doing this, but here we go again.Here we go again by popular demand.People just love the podcast.Yeah, I cannot believe that we have so many people who not only listen but also care that we put out new content.
0:27
So this season is going to be a smorgasbord, a variety of different topics.So one of those topics that I'm excited about is success stories.So we're gathering stories from clinical ethicists around the country, maybe around the world, who have done something really positive for their hospital system, made a big change because they were there.
0:51
We spent a lot of time talking about difficult cases, a lot of episodes about really hard things in medicine and healthcare, but I'm excited to see what kind of success stories people are able to share.So really exciting.We're also going to talk about AI in healthcare.
1:08
Lots of interesting topics, questions, controversies, lots of confusion and clarification that needs to be.Set straight and we promised those episodes weren't written by AI.At least not all of them.So, Devin, we have very interesting jobs.
1:28
Often times people who I tell about my job are equal parts confused and amused that somebody gets paid to do something like what we do.But that got me thinking about jobs that maybe we thought that we were going to do.
1:44
So my question to you is, when you were small, what occupation did you tell people that you were going to have as an adult?The only thing I can ever remember saying as a kid was that I thought I'd want to be a lawyer because my mom was a lawyer.
2:01
And as she was really inspirational, so I thought, you know, and I like to argue.Perhaps because I grew up in a household where arguing at the dinner table was sort of a prerequisite to eating.That's hilarious.I've noticed that often children who have maybe better than average social skills, who like to argue, like to ask the question why can hold a conversation with an adult, often get told that they're they ought to be a lawyer when they.
2:29
Grow up.Do you think that translates into a good lawyer?No, I think it's got nothing to do with being a good lawyer unless you're playing a lawyer on TV.So when I was little, I always told people that I wanted to be a rodeo clown when I got big.
2:45
What?Who thinks of that?How did you even know what a rodeo clown was?Well, I grew up in Indiana there, I mean, rodeos, horses, outdoor, like, yeah, went to a County High school.So I, I don't remember when it started, but I think that probably I went to a rodeo County Fair, maybe as a small child and just latched on to telling people I wanted to be a rodeo clown and got some sort of funny reaction to it and kept doing it all the way through high school.
3:17
And I remember telling my high school guidance counselor who was concerned about my future, that I wanted to be a rodeo clown.And the next time that I had my follow up meeting with her, she had researched rodeo schools or clown schools in the South as an option for me after high schools.
3:35
I'd say I could see it, but that is a dangerous job, Tyler, I I just cannot see you running around in a clown suit trying to avoid the bull.Yeah, I think it was better as a as a kid.I I don't think that it would be something I'd be good at or enjoy at this.
3:52
Point your talents would have been wasted.You are my favorite podcast host of all time.Oh gosh, that's very nice of you to say.This season is gonna be, like we said, a variety of different things, topics, and it's gonna be coming out, episodes are gonna come out as we finish them.
4:09
So in the past, we've kind of tried to cluster them, but every Thursday, not every Thursday, let's be clear, many Thursdays upcoming in the fall, we're going to be releasing new content, new episodes.People are always welcome to send in more comments, more suggestions, more links to articles they'd like us to respond to on our website or however else they can.
4:31
Yeah, and if you didn't know, tons of great merch on the website, so check it out.Merch.My kids kept telling me that we needed to put some merch out.So we've got some hats, some coffee mugs, stickers.I tried to get us golf shoes with our faces on them.
4:47
No go.No go, too expensive.All right, well, we do have a surprising article of clothing on that website, so you really have to check it out.I don't want to spoil it.Yeah, all right.Season 6 coming soon.
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Devan and Tyler explore the Willowbrook State School, that stands as a stark symbol of the dark chapters in the history of medical ethics and public health. Willowbrook gained infamy for its association with highly controversial medical experiments conducted on children with intellectual disabilities during the mid-20th century. Led by Dr. Saul Krugman, the Willowbrook studies became emblematic of ethical questions about the treatment of vulnerable populations and the boundaries of medical research.
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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.
Links to Sources and other Interesting Stuff:
“Dax Cowert, Who Suffered for Patient Rights, Dies at 71” The New York Times, Obituary, May 15, 2019.
Documentary: “Dax Cowart — 40 years later”
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.
44:05
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.
44:25
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