Taboo Trades
Taboo Trades
Imminent Death Donation
I’m joined today by two special guests to discuss an unusual and ethically complex type of organ donation – imminent death donation, or IDD. As you’ll hear Thao Galvan explain in the episode, organ donation currently has three standard types: living donation, donation after brain death (a type of deceased donation in which the patient is declared brain dead, and thus legally dead), and donation after circulatory death, or DCD. In DCD, a patient who is not brain dead is removed from life support, but the heart keeps beating. If it takes the patient more than roughly 90 minutes to die, the organs may not be usable. IDD, or imminent death donation, attempts to prevent that, by retrieving non-vital organs (usually a kidney) for donation prior to the removal of life support.
Thao Galvan is a transplant surgeon and professor of surgery at Baylor College of Medicine. Kathy Osterrieder is a retired financial analyst, who came to this issue after attempting, unsuccessfully, to donate the organs of her late husband, Robert Osterrieder, after making the difficult decision to remove him from life support. It is another first for the Taboo Trades podcast – the first time in over five years of recording that I’ve been unable to hold back the tears, as Kathy talks about what the experience was like for her family.
Links
Host: Kimberly D. Krawiec, Charles O. Gregory Professor of Law, University of Virginia
Guests:
Nhu Thao Nguyen Galvan, M.D., M.P.H., FACS, Associate Professor of Surgery, Baylor College of Medicine
Kathleen Osterrieder, Donor Family Member in Spirit, Retired Financial Analyst
Reading:
The Difficult Ethics of Organ Donations From Living Donors, Wall St. J. (2016)
Let’s change the rules for organ donations — and save lives, Wash. Post (2019)
OPTN, Ethical considerations of imminent death donation white paper (2016)
Survey of public attitudes towards imminent death donation in the United States, Am. J. Transplant. (2020)
Thao Galvan: Well,
you know, if I could speak to the public and really to transplant professionals, intensive care,
healthcare workers,
you know, I believe that the public's trust goes both ways.
I think we should honor the values that people have in their passing, just as we do in their living.
And we are stewards of their legacy.
And I'm afraid that in our apprehension to do no harm, we may in fact be far from doing good.
And so I would encourage my peers to have to be brave and to be courageous and to do the right thing. And I think that this is part of doing the right thing.
Kim Krawiec: Hey. Hey everybody. Welcome to the Taboo Trades Podcast, a show about stuff we aren't supposed to sell, but do anyway. I'm your host, Kim Kravika.
I'm joined today by two special guests to discuss an unusual and ethically complex type of organ donation,
imminent death donation, or idd.
As you'll hear Tal Gowan explain in the episode,
organ donation currently has three standard living donation,
donation after brain death,
a type of deceased donation in which the patient is declared brain dead and thus legally dead,
and donation after cardiac death or dcd.
In dcd, a patient who is not brain dead is removed from life support, but the heart keeps beating.
If it takes the patient more than roughly 90 minutes to die, the organs may not be usable IDD or imminent death donation attempts to prevent that by retrieving non vital organs, usually a kidney, for donation prior to the removal of life support.
Tal Galvan is a transplant surgeon and professor of surgery at Baylor College of Medicine.
Kathy Osterrider is a retired financial analyst who came to this issue after attempting unsuccessfully to donate the organs of her late husband, Robert Osterrider,
after making the difficult decision to remove him from life support.
It is another first for the Taboo Traits podcast,
the first time in over five years of recording that I've been unable to hold back the tears as Kathy talks about what the experience was like for her family.
I'm going to begin by just asking you both to introduce yourselves to our listeners. Tao, let's start with you.
Thao Galvan: My name is Tao Galvan. I am an associate professor of surgery at Baylor College of Medicine in Houston and I practice medicine by doing abdominal transplantation in both adults and children.
Kim Krawiec: And Kathy, what about you?
Kathy Osterrieder: Hi, my name's Kathy Osterwriter. I'm a retired financial analyst. I live in Pittsburgh, Pennsylvania and mother of three children.
I've been a widow since 2012 and have seven grandchildren.
Kim Krawiec: First of all, thanks both of you for being here.
We are here today talking about imminent Death donation. And I'm just going to start.
We are going to tell listeners what immin death donation is in just a minute.
But before that I want to just ask you both how you became interested in this issue. Kathy, I would like to start with you. I know that you came to this issue because of your late husband Robert.
I wondered if you could tell us a little bit about that.
Kathy Osterrieder: So I became interested in the discussion in September or early October 2012 when my adult children and I were making the difficult decision to remove my husband from life support. He had been hospitalized for five months continuously.
And at that time we inquired about organ donation only to learn that the medical professionals didn't think he would qualify because although his brain was severely damaged, he was not brain dead.
They also didn't know if he would meet donation after cardiac death requirements because although he was very ill,
he was a healthy 52 year old man. And I put healthy in quotation marks.
We were all non medical professionals, but were quickly getting an education in organ donation protocols.
One thing that we didn't understand was that any one of us could agree to be a living donor. But in Bob's case, this wasn't being discussed as an option because living donors give their own consent.
And since he was on life support and unable to communicate, it wasn't an option for him to give his own consent.
And this really struck a chord with me because for five months I had consented for surgeries and procedures on his behalf due to his inability to do so himself.
But suddenly in the organ donation arena,
my consent wasn't valid. And in order to pursue the possibility of him donating a kidney or part of his liver prior to removing him from life support, I had to meet with a hospital ethics committee and the legal hospital's legal department had to give their approval.
And once we got those approvals,
then the organ procurement organization was able to continue with their work and try to find a surgeon that was willing to take the case.
And we,
even though, you know, with these approvals we weren't successful in finding a surgeon that was willing to take the case.
And we proceeded to remove him from life support but his passing didn't occur for 48 hours later, so he couldn't be a donor.
And my children and I remain committed to getting protocols changed so that other families can fulfill their loved one's wish to be an organ donor in a similar imminent death donation situation because we feel it's the right thing to do and something good could come out of a horrible situation that we were faced with,
and another family would benefit from that decision.
Kim Krawiec: Thank you. And we're going to come back to some of the issues you just brought up, Kathy, as we go through this discussion today. Tal, what about you? How did you first become interested in this issue?
Thao Galvan: Well, I came at it from the other side of the spectrum.
I was one of the surgeons, you know, I was training as a fellow. You know, you don't really know a lot about organ donation until you're actually in the midst of it.
And so I was sitting there in the waiting area waiting for someone to pass in a DCD fashion, like Mrs. Osterrider was mentioning.
And, you know,
30 to 40% of donors who are along this protocol actually never pass the time necessary to successfully donate their organs. So I was flying in and waiting,
you know, two hours to see if the patient would pass, and then they don't, and we get back on our jet and we go home. And for me,
that was a profound sense of waste. It was sadness on the donor's part. Here they feel lost a second time over.
It was a waste on the jets and the resources, the surgeons. It was. It was just a sad situation for me. So I wrote about that experience in the Washington Post.
And then from that article, Mrs. Osterrider reached out to me and we've created this alliance now for more than nearly 10 years.
And she's inspired me. She and her family have inspired me. And so we've looked into it and we found that if you were to look at all the DCD donors from that year that we were studying,
about a hundred of them could have successfully donated their left lateral segment of their liver in this way.
And do you know how many kids a year go without a liver transplant? It's about 100.
So in theory, one could say that if. If we were doing this large scale, you could clear the pediatric liver list. There's been research to suggest it could clear some state's kidney transplant waiting list.
And so this profound opportunity struck me as very strange. It was like low bearing fruit that we aren't planning, plucking. And so the further I went into it, the more I realized that there were many barriers to this,
and I didn't think many of them were valid. And so these past 10 years,
I've been trying to work with Mrs. Osterrider and her family to create a system that works for everyone, including organ donors and including their family,
because I have an aversion to wasted potential.
And in my mind, I think, does it support life this Absolutely supports life. You know,
our society embraces innovation and technology,
but really if we invest the same effort and emphasis on just implementation,
we have the staff, we have the resources, we have the protocols in place.
We just need to create a little bit more.
And you could serve families like the osterriters, you could serve families like the osterwriters recipients who would receive those organs.
Everyone would be served and in my mind there would be very few losses. And so for me it's a no brainer and it's become.
I thought it would be so easy to just create policy.
It's a lot harder than I get it credit for. So that's why we find ourselves here in your podcast, which I really do appreciate.
Kim Krawiec: This is a good segue for a couple of things. First, you mentioned the Washington Post piece that you wrote. Just to tell listeners I am going to have a link to that in the show notes so that people can read it in full.
And this is also a good opportunity to go into a little bit more detail about the types of organ donation that are available and how they differ from imminent death donation.
I know that Tao mentioned DCD and we haven't. We're going to tell you what that is. Not all listeners will know, although most of our listeners are very familiar, I think with the difficulties of policy change.
And so this is something I think that's really going to resonate.
So Tal, can you just give our listeners a bit of background then about the different types of organ donation if I understand them correctly and you'll correct this if it's wrong, there's living donation,
donation after brain death,
DCD, as you called it earlier, donation after circulatory death. And then there's what we're talking about today,
which is imminent death donation.
And if you could just run through those sort of what they are and why imminent death donation is an important addition that we need to supplement the types that we currently already have.
Thao Galvan: So there are three ways that the US allows for organ donation and you listed the first three. Living donation is where you or I feel great. We have a nephew or a cousin or a mother who needs a kidney.
So we put ourselves through the evaluation process and then we donate one of our kidneys to our mom.
That's totally fine. Because as far as the dead donor rules goes you this which is an ethical standard in transplant medicine, it's not law, but it helps actually inform a lot of law about the definition of death.
That standard says that you cannot take a vital organ from someone and before they're dead or else you cannot, it cannot cause their death. So because I can live without a kidney, fine,
then I can donate one kidney or one can live without a segment of their liver. So, so then they can donate that segment of their liver. So living donation is something for really healthy people, actually.
And so they have a long life ahead of them, and that's the expectation. So we subject them to the risks of a surgery that in theory doesn't physically help them at all.
Now, if you go to what most people understand of organ donation is from the deceased, right? So both brain death and DCD donation is from deceased donors.
Brain death, though, requires the definition of brain dead, right? So to be brain dead, this was based on the Uniform Declaration of the Death act, which basically says you have to have irreversible loss of the capacity for consciousness.
And so you can't spontaneously breathe and you can't have any reflexes right from your brainstem. And then beyond that, you shouldn't have any extenuating circumstances like drugs, intoxic drug intoxication,
extreme hypothermia, et cetera. That might complicate the definition. So you have to be diagnosed as dead. But this isn't what TV describes as dead. You know, you're not cold, you don't have a rigor mortis,
your heart still beats.
If you inflate the lungs with a machine, it still circulates oxygen. And so while the body is still warm, there isn't any expectation that there will be recovery of the brain.
And so that is, that is a type of death that's called brain death. Donation after circulatory death is really what we conceive of death for the majority of us, which is the heart stops, the lungs stop, everything stops.
And then only after that declaration of death. We usually, what we do is we take the life supporting measures, that's often the ventilator, any medications to keep the blood pressure up, we'll take that away when we feel like there's nothing else medicine can do.
And then we wait.
That waiting time varies between people. Like Mrs. Osterwriter said, it took her husband more than two days.
For some people, it takes 25 minutes.
And so this is the crux of organ transplantation, because the length of time it takes affects how much oxygen the organs are receiving.
So as a general rule, 90 minutes, 120 minutes. Most people accept that timetable as acceptable for organ transplantation.
There are consequences. It could lead to less superior organs as opposed to, say, a living donation.
But it's still an organ And Lord, if you're like dying on the wait list, certainly you'll take it, right? But that doesn't mean it doesn't come with consequences.
But so DCD is where you take the life sustaining measures away, you wait for death,
you declare death. This is usually about five minutes after the heart stopped beating, you declare death, then you rush to the or, OR you already are in the or, and then you proceed the OR can proceed to organ procurement.
And so that's kind of the three ways that we donate organs currently for idd. Eminent death donation,
also known as living donation, prior to withdrawal of life sustaining care.
I imagine like a Venn diagram between living donation and dcd.
Really it's just timing.
In this case, we take one kidney before we withdraw any care, any life sustaining care,
and then thereafter we return the donor to the family and then that's where we withdraw the life sustaining care.
And so what it allows for us to do is take an organ that physiologically is excellent, well oxygenated,
going to do really well in whatever recipient it's intended to. And then what it also does is had we gone down the DCD route, the donor may not have donated at all.
30 to 40% don't.
That's a huge number of people who aren't able to donate, who wanted to.
And then furthermore, the organs that we get are really great organs. And this is a big difference. In fact, when I talk to my pediatric patients,
I say if we can get a living donor, that would be very ideal because a deceased donor kidney lasts an average of 12 years.
A living donor lasts an average of 20 years.
That's a number of years,
right? And so in our mind, in our thinking when we talk about idd, we think certainly that we're serving the patients that we're supposed to, which is the donors and the donor families, we're keeping them from hurting a second loss and we're actually allowing them to die in the same way they live with a legacy of sharing and commitment to community.
It's just something beautiful. But then beyond that it allows for really high quality organs that will serve the recipients.
So there's so much life in this and, and so that's why we try and describe it. But it can be kind of convoluted because it's about timing, it's about where we do this and who does it.
And so these finer points are, I think, where a lot of the barriers lie.
Kim Krawiec: We're going to come back to, to some of those barriers in a minute. But Tao, if I am Understanding you. Right. For, for listeners who perhaps aren't as steeped in organ donation,
really, we're talking about a change in the order in which we do things. Right. Although it has big consequences in terms of the ability to retrieve organs and the health of those organs.
Right, but rather than first removing life support and then say taking a kidney, we're taking the kidney first and then removing life support.
Is that an okay way to think of it or no?
Thao Galvan: I think it's a very good way of thinking of it, but it is in some ways.
I think some of my colleagues and professionals might criticize me for simplifying it too much that way, though. That's how I think of it. The truth is, when you talk about the dead donor rule,
you worry about things like, well,
okay, I'm going to take a non vital organ like a kidney, but what if the patient bleeds? Do we transfuse the patient there? Do we take the patient back to the operating room to stop the bleeding?
At what point do we say this is no longer medical care? Or do we have to because we have created iatrogenic injury?
And so these little things seem little, but actually they can amount to a lot because then my transplant, or rather my organ procurement, did lead to the patient's death. And is that acceptable if in the background the patient was eminently dying already?
And so these are real concerns, real legal issues. I mean, no one wants to be culpable for practicing medicine, but in truth, I mean, you do have to worry about this nowadays and, and all days, actually.
In fact,
nearly 20 years ago, there was someone, a transplant surgeon, who was not, not accused of murder, but he suggested to anesthesia that he give narcotics and anxiolytics and whatnot, more than what was acceptable or,
or whatnot. And, and in fact, he faced some charges. They were ultimately acquitted, but it is not unheard of for medical professionals to face legal issues.
And,
and you know,
that's never the intention. I know that when transplant is in the media, it's often for negative reasons,
but in truth, what you have are thousands and thousands of people,
often donors and transplant recipients themselves,
who only want to help, who only want to do the right thing. And this is a very tricky topic and it can cause some repugnance. And I think that that's why there's an aversion to toeing the line, because nobody wants to get in trouble.
You know, we still all have to work and still feed our families and take care of what we have to take care of. And, and so we don't want to compromise the public trust, but we also don't want to be accused of doing something that we didn't mean to do at all.
Kim Krawiec: Thank you. That's. That's really helpful to think about. And yeah, we don't want to oversimplify what is a very complex decision and complex ethical dilemma that we're talking about today.
We're going to come back to some of the objections to imminent death donation.
But one of the things I do want to emphasize is, you know, legal risk is one thing, and we of course, don't want that.
But there are reasons to be wary of things that we do well short of any legal risk. And we're going to talk about sort of confidence in the system coming up.
But as lawyers, we seek to advise clients, I think, on how to avoid any implication that you did anything wrong, well, short of actually being sued or being threatened with liability or disciplinary actions of any sort.
So we're going to come back to that issue. But I just wanted to emphasize that I'm very sympathetic to the notion that not only would you not want sort of legal liability, but you really don't want any sort of so negative publicity associated either for yourself or for the transplant system more generally,
which is something, I think, that we're all here today because we care about it. Right.
Kathy, can I turn to you to talk about this a little bit? It would be helpful, I think, to get your perspective as someone who has been through this on what the availability or not of imminent death donation would have meant to you and your family and why you think it's important.
You've talked about that a little bit already, but I just wanted to turn back to you and see if you wanted to add anything to what Tal has just said.
Kathy Osterrieder: Well, first I would like to say that as far as doing something that people object to,
Bob was a rule follower.
He was an engineer.
He was an engineer in the nuclear field, which is very regulated.
So he was familiar with protocols.
And the last thing he would want to do is jeopardize a transplant program.
And we talked about that a great length as a family.
They told us that we could remain anonymous.
But it was my three children and one son in law at the time. I said, well, all five of us have to be on the same page and in agreement.
And we have to figure that with social media, people can figure out who donated an organ,
but, you know, it doesn't take rocket science all the time.
And we have to figure that it could go public and you know, and if everyone's not comfortable with that, then we stop. But we all decided, no, this is the right thing to do.
And my husband, their dad,
would have wanted to do this. He wasn't registered organ donor for years.
We were just taking it one step further.
You know,
we sat at his bedside for five months hoping for recovery.
And, you know, especially in the last couple weeks, we had a surge in that. We thought there was some hope in procedures that he was doing,
but we realized that no,
there wasn't hope and Bob wouldn't want to continue his life the way it was at that time.
That's what led us to the removing life support, which I hope no one ever has to make that decision because it's a horrible decision.
And when we found out that we as surgeon backed out,
we wanted to go to the media and try to change things, but we were told that, no,
the organ procurement arena is just very strict and slow to change. And it's not going to change overnight.
And it wouldn't be fair to Bob or to our family to continue to keep Bob alive.
Waiting for change.
The Oregon Procurement Agency did everything they could do in a short period of time. Meeting with an ethics committee and waiting for the legal department to give an okay was very unnerving and uncomfortable for our family.
You know, Bob was a religious person. He was a person that volunteered.
You know, he was a scout leader. He was a work camper with our church.
He loved spending time with his family planning vacations and get togethers.
So this was not out of his personality and wishes. We were just fulfilling his wishes. We felt.
Kim Krawiec: Thank you for that. And as a note to listeners, again, there is,
I believe it was a Wall Street Journal article that talks more about.
About the Oscar Rider family's experience. Give some more details into Bob's life.
And I am going to link to that in the show notes so that people who want to read more about this experience and the folks involved in it can do that.
Okay, so you've both. We've hit on this a little bit, but I want to come back more specifically. I think Kathy mentioned, right, the statement that things change very slowly within the transplant world.
And this is one of those things that it's been a while now that you guys have been,
as you said, I think you meant, said a decade that the two of you have been teamed up talking about this.
And so that suggests, of course, that there are objections to this, otherwise we would have just done it already.
So let's talk about what the objections to this might be and what your responses might be to those. And I'm going to turn to TAL first to go through some of the objections.
And Kathy, I of course want to get your perspective on these objections as well.
Thao Galvan: So I think to frame this, I think it would be really good to reference a 2016 white paper by the Ethics Committee of UNOS.
And I think that this is important because it was a beautiful feud and consideration of the ethics of eminent death donation.
Ultimately, what they found was that in circumstances, living donation prior to plan withdrawal would be ethically appropriate and justified.
But they listed a number of concerns and a lot of them surrounded the impact that the public. The impact of the public trust.
Right. The concern was that, well, we already have a lot of myths, misperceptions, and lack of education on organ transplant in general.
If this were to go sideways,
then what would happen to organ donation rates, to organ transplant,
to our whole exercise here?
And I think that there was some validity to it, but it's also why I actually created a survey and published nearly 2,600 respondents.
These respondents were given a scenario.
We named the patient Jason. Right. And Jason went and had some head trauma, but he wasn't technically brain dead. And then we put him through the same process, very similar to Mr.
Rider.
And then we asked a number of questions and ultimately more than 70% of the respondents agreed that they would.
That they themselves would donate or at least agree on behalf of their incapacitated family member to donate in a situation like jc. So that was one of the biggest concerns of the Ethics Committee.
And I feel like by just being able to publish that finding, that these people who I tried very hard to be representative of the American public, and in fact, there are less organ donors on my survey respondents than there are in the American public.
Public. Okay. So if you're likely to be an organ donor, you're more likely to agree with this process. So there's over. I mean, think about what do Americans agree on with the greater than 70% calculations.
Right. So I think it's a profound number.
Kim Krawiec: It's a great point. There's almost nothing that we agree on at that level anymore. Yeah, exactly.
Thao Galvan: And so I think that because of that, I mean, certainly we're not going to make everybody happy, but the intention is not to. To make everybody happy. It's to offer a service for our patients who are dying and their families who we have documented, would we harm by going through this.
Right. I can't imagine what Mrs. Ostride and her family have gone through. It's harmful in some ways. They weren't even our patients.
So there is something to be said about the fact that I think we underestimate our public's ability to understand risk and. And benefit. I'm sure we don't need to get in the weeds of when does this oxygenate, when does that oxygenate, when are we withdrawing this and what medications are we using?
But I don't think that's necessary. I think that if you can explain things to willing family members, willing donors. I mean, if you. If, and I've said this to my husband, I am a registered donor and I want to be Don.
I want to donate in this way. The truth is, you and I have three to five times more likelihood of needing an organ than ever becoming an organ donor.
In fact,
only one in a thousand deaths lead to organ donation.
That's incredible. Out of 1,000 deaths, only one of those people will be able to donate. And so I say this to emphasize how rare this ability is.
And if it comes up, this opportunity should be given to those who can take advantage of it if they want to. We're not forcing anyone to do anything they don't want to.
But obviously Mrs. Rider has been advocating for this for over a decade. And so there are families that are not unlike her who would have taken the opportunity or would have wished to have taken the opportunity, or will take the opportunity.
And so I do think that that's a really big point.
Now,
the white paper also listed some other things, which is lack of community support and risks and substantial challenges to implementation. And so we talked about implementation before.
You know, transplant is a machine.
There are so many cogs operating at the same time. A time element, too. Right. And so it's very hard to get all these cogs to work together, but it does.
Constantly. Many times a day, people are flying all over the country to retrieve organs on behalf of their recipients.
In my mind, if we can do this,
then certainly we can offer this alternative.
Now there are things like right now operating on a deceased person, like a brain dead person or someone who went through DCD and now are declared dead. And so now we take them to the OR and procure organs.
You don't need a license for that. You can practice in all 50 states.
In Puerto Rico, it doesn't matter right now in this case, if we do this, then we have a living donor.
And so who can practice on this living donor? Are you going to find a surgeon who's ethically willing to do this,
who feels comfortable to do this,
and. And True, truth be told, we put very healthy people through living donation.
Is someone who's eminently dying going to sustain the same likelihood of success?
You know, you know, we have a less than 1% chance of death as a living donor. As it stands, I can't imagine it'd be that good for someone who's eminently dying.
The anesthetics might cause something, some dysrhythmias to the heart. And then what do you do? Do you do perform CDPR in the or, or do you let the patient pass?
What do you tell the family? The family can't be there. Do you bring the family in emergently? What if the, you know, abdomen's open? So there are a lot of barriers, a lot of, I shouldn't say barriers, obstacles to making this a reasonable pathway, but they are there.
And I can't deny that it won't be that it, that I can't deny that it won't be difficult to implement. But that doesn't mean we shouldn't. Right. I think that there,
Can I just.
Kim Krawiec: Ask you to clarify. So this is a, these are a different set of concerns. I would have thought that the concern would be making a mistake,
right. In terms of,
in your average person's mind about whether somebody's really imminently dead or something along those lines. But this actually sounds like a different objection than the one I sort of had in my mind,
which is this definitely may be hastening death, but it's a death that was coming already. And all of the examples that you just gave, this is almost more of, it might run afoul of the way we currently envision the dead donor rule.
But none of the examples you gave struck me as the type of objection of oh gosh, we might make a mistake about somebody. It's a different type of objection than I think your average person, your non medical professional might object.
Thao Galvan: Well, I think that you tap into like the,
like one of the deep fears and dreads of people when they think about organ donation is are you going to take my organs long and alive? Right. So that's, that's really what you're suggesting.
And I, and I think that's part of the public trust question. Like,
and I think it's a salient point. However, it's always been true whether you're talking about IDD or not.
And, and I think that this is a failure on our part in transplant medicine. But the truth is I come to, I get in a car wreck, I come to the hospital,
the intensivist takes care of Me. The surgeons take care of me. Everyone takes care of me. The neurosurgeons take care of me.
And there comes a point where I'm probably not recovering, right? And so in that case,
then they might call the op of the organ procurement organization,
but the organ procurement organization is not going to come in until the medicine doctors who are caring for me, trying to save my life,
are assured that there's nothing further that medicine can do for me. Only then does a totally separate team come in and start deciding, well, is this a very viable candidate for organ donation?
And then once they make that assessment separate of your medical team, your medical team's just like, oh, okay, well, I mean, there's nothing else we can do. Well, then, then we, we come to the family and say we were very sorry for what you're going through.
Is organ donation something that you think your loved one would have participated in? Is that something that you would like to participate in?
And so then after that,
say, the family says, yes,
but it's going to have to be DCD because we don't fulfill the definition of brain death. Well, then we go to the or, we allocate all the organs, the teams fly in, and then we wait, right?
We wait, we pull the tube, and then we wait the five minutes.
Well,
does a patient suddenly breathe on their own? Are they going to last this X amount of time?
I will say there's a lot of insecurity, even amongst intensivists and the medical community. Like, do we make a mistake? Are we notoriously bad at determining when someone will die?
And I will say that,
like a large scale, like months to years, we're probably pretty bad at it.
But as far as days,
I mean,
there's a stark difference between someone who has cancer that may survive two, ten more years,
as opposed to someone who just got a huge car accident, got into a huge car accident, huge neurological insult, and will probably never recover. And you can probably tell within a number of days in that situation.
But what you're talking about is definitions and verbiage. And that's important. I mean, especially coming from a lawyer, I know that these words and these nuances and these definitions, like, give a lot of medicine.
Doctors are a lot like engineers. We have angst over protocols and definitions,
and we want to make sure that everything we're doing is, is by the line and by the book.
And so, so I. That is actually one of the things that the, the white paper does talk about is just being able to define, well, who's going to be A candidate is that ALS patient who's losing his control of muscle.
He can tell me he wants to be a donor, but I don't know when he's going to die. Is he going to die in two years? Am I going to take a kidney now from him?
And he's expected to live two years? What if I take three years from him and he was going to live five?
So then, then we have to say, well, who actually fulfills a definition of a donor? Which I agree,
murky, and it's quite the charge. But I would argue it's part of our responsibility and being able to help guide people on the right decision.
And so I would argue that. I think our medical professionals are really.
They can be pretty accurate. And in fact, I'll prove it to you by saying that there is one study where they studied over a hundred, almost 200 DCD donors who didn't pass, and they followed them and they didn't recover.
None of them recovered. They may have taken longer to pass,
but they never recovered neurologic function,
and they never were able to speak and wake up again and such.
So that study is an interesting study that is cited in the white paper as well.
And I think it's an important one to,
I want to say, reassure the public. But I know that there's also always evidence the other way.
But for the most part,
we're really, really good at being able to define who might be a great donor and who might not be. But we're not very good at the particular amount of time it takes.
And so it will require a large community of a specialist to be able to create definitions that make everyone comfortable.
Kim Krawiec: That's really helpful because if I'm understanding correctly,
this is not that this is an unreasonable concern.
It is a concern, though,
that permeates transplantation and in some ways, medicine more generally. And it is the type of decision that we currently do and always have trusted medical professionals to make and have.
This isn't particularly different in that respect.
Is that a fair.
Thao Galvan: Oh, absolutely. I mean, we have philosophers who will argue that one live neuron does not count as brain death.
And then you'll have other specialists and professionals arguing in the same room saying, that's absolutely insanity. That's absolute insanity. Like, how can you be so pedantic about it? But, you know, that's.
That's the breadth of sentiment. And, you know, it's really where you draw the line. And I think that that line is kind of looks black and white from the public, but is actually can be Gray as we parse it all out.
And I think that's why there's a lot of consternation in implementation of IDD is because it's requiring that we, we really define a little bit more that line that you and I are discussing so that we can make sure that most people are very comfortable and that nobody goes to jail and that nobody commits murder and,
you know, all the important things.
Kim Krawiec: All the important things. Tal, do you have other objections you want to address or do you want to turn it to Kathy to.
Thao Galvan: I think Kathy could speak probably better on this. Certainly there are a lot more if we to want go into the weeds. And I'm happy to entertain any questions that any of your listeners or anybody on the, on the planet has.
But let's hear what Kathy has to say.
Kim Krawiec: Yeah, Kathy, let's turn to you. I would like to get your perspective on some of the objections, including notions about the loss of confidence and the transplant process and in part because you saw it up close.
But any, actually, any of the aspects of objections to this that you would like to speak to would be welcome.
Kathy Osterrieder: So one thing I can tell you, when Bob was in treatment for his medical condition that started with double vision problems and increased cranial pressure and he was getting shunts,
and I think it was over a year that he was in treatment.
And then it was when he had his third shunt replacement in May of 2012 that things went south. And he ended up overnight,
the day after surgery on life support,
and he was not expected to survive.
I was told before I went home that, you know, things are not looking good and,
you know, they were expecting him to pass. And they asked me if he was a registered organ donor. And I said,
you know,
yes. I'm like, you know,
90 plus percent positive he's a registered organ donor. And they said, okay, we don't think anything's going to happen immediately, but go home, try to get a good night's sleep,
but bring his driver's license in in the morning.
Well,
thankfully, overnight, his condition improved and he gave a thumbs up, which in neurological arenas is a huge,
huge improvement.
You know, showed that he was able to hear and things improved. That was the last conversation that I had with anyone about organ donation. That was May of 2012.
And then jump forward to September and October of the same year when we were deciding we wanted to remove, thought we should remove him from life support.
We were the ones of family that inquired about organ donation.
So our firsthand experience was, you know, we had no doubt that the Medical team was trying to save his life and make things better for him.
You know, whatever went on behind the scenes as far as an organ procurement team evaluating patients, it was unbeknownst to us, if it happened at all.
But I've been told that it does happen periodically when medical teams think that a patient isn't in the best of shape.
But that was never a concern of ours, for sure.
He was always getting the treatment that he needed and deserved.
Thao Galvan: Could I suggest, Mrs. Osterrider, that you talk about autonomy and surrogate decision making? You made a great point earlier, but I wanted you to stress it because I think it's a profound point that a lot of people argue against.
Kathy Osterrieder: So for the five months that he was in the hospital,
he was non communicative the whole time. I mean, he did make it to a traumatic brain rehab program at one point,
but he was still, you know, we were trying to get him to say the ABCs or, you know, sing nursery rhymes type things. So really not communicating with us.
And all during that five months,
I consult, I consented to many, many surgeries.
You know, they implanted devices to measure his cranial pressure.
1. I don't know what the one procedure they were doing, but I remember them coming out and talking to me and discussing that his brain was so swollen, they wanted me to consider removing parts of his skull.
And I don't remember what that actual procedure is called, but they would remove parts of his skull,
place them in a freezer, and hopefully someday be able to reattach them once the brain swelling went down.
I made those decisions and gave okays of whether to do different things like that.
And never once did they ask me if Bob and I had discussed that.
But when we got into the Oregon procurement arena,
the ethics committee was asking me if we had ever discussed if Bob and I had ever discussed the different cases.
Is it Terri Schiavo?
I think a Quinlan.
You know, did I ever. Did we ever watch a movie? Did we ever watch a TV show that dealt with organ donation?
And that was how they were trying to determine if I was able to consent for organ donation.
Meanwhile, you know,
he and I never discussed whether he wanted to have sections of his skull removed if necessary.
It just seemed like there was a line drawn in the sand suddenly that my consent wasn't valid and, you know, and I was the legal spouse.
Wasn't like we brought in a second cousin that suddenly was going to give approval.
Kim Krawiec: Thanks, Kathy. That is really an important point, I think. It's funny Tal brought up earlier that doctors are kind of like engineers and that they like to follow protocols.
And lawyers are kind of similar.
But one thing that we like to see is consistency, right, that activities or behaviors that are similar are governed by a law that's similar or to the extent it's dissimilar,
can be justified by pointing to particular things. And so to go to your point, Kathy, this is the first thing that kind of struck me as a lawyer. Why would the person who has been empowered,
the surrogate, right, in this case you, with such authority to make such important decisions about care and end of life,
not be similarly empowered to make this decision? And how must that have made you feel at a, at a horrible time when you had so much to deal with already and were looking,
I assume, for something that would make it seem like something good could come out of your family's suffering?
And so that is one of the things that struck me about some of the statements you, you made to the press and that really sort of drew my attention to this issue was the difference in the way that these decisions are being approached in this regard.
Did either, do either of you want to add anything to that? If not, I'm going to go to your, to questions about what you would want a system to look like if you, if we had one.
Thao Galvan: I can't think of anything else. I think that that really, though, is the crux of the matter, is whether to surrogate decision making is valid, especially in a situation where the patient won't necessarily receive the direct benefits.
And I think that's where I think in medicine we kind of hem and haw because,
you know, we can try and consent Mrs. Osteoporo Bronchoscopy because, oh, we're clearing his airway, we're getting the bugs out, we're trying to culture to see if there's anything we need to treat.
But when we take an organ,
then we're thinking, who. Who am I serving?
And I think that that can create a disconnect for some of our healthcare workers.
But I, but I do think that the idea that if she can agree to all of these things on his behalf,
to his benefit, why wouldn't,
why should you assume that this isn't also for his benefit? I can't imagine Mr. Osterrider wanting any of his family members to suffer any more than they already have.
And so,
you know, we may not be able to object to quantify the benefit of this in a physiologic and physical way, but it doesn't mean it isn't profound and that it isn't important.
Kim Krawiec: I. I knew that you would say that because that is the distinction that's always made in the literature between benefit for the patient versus not.
And I guess I don't.
I don't find that completely persuasive for. For the following reason.
Kathy Osterrieder: Right.
Kim Krawiec: Which is that different patients will find different things to be to their benefit. And one of the great battles, as Kathy alluded to earlier,
is about extending life and how we define what is in the best interest of the patient and who decides that. And so this, to me, is a case where it seems to me an argument can be made about how.
Whether these things are different, whether any of it is really what Bob would have wanted.
Kathy had been the one empowered to decide that. And to me,
the decision about organ donation doesn't seem that different. It really just depends on what, as you say, how we define what is a benefit to the patient and who gets to decide what the patient themselves would have thought it was.
Thao Galvan: I think it's funny because the criticism is like, well, we're taking it.
We're questioning the autonomy of the donor, and we're trying to protect the donor, but isn't it a bit paternalistic to suggest that this is what would benefit them and this wouldn't benefit them?
Kathy Osterrieder: And.
Thao Galvan: And so I sometimes wonder if there's analysis paralysis in the academic community and in the transplant community, because it is hard and it is there. It's easier to be a little bit complacent, but there is a lag between us and the modern worldview of our patients, I think.
Kim Krawiec: Yeah, well, great. This has been really helpful so far. One of the last things I wanted to talk about is let's assume that you two got your way right? And we now have a system in which imminent death, donation is.
Is approved of and performed.
And I think we all agreed that there are some issues nonetheless, even though we're here to. To advocate for this system.
And so, again, I will take the lawyer's perspective. Oftentimes we think that when there are pros and cons,
we might try to design the system, the rules that govern the system in a way that maximize the pros while minimizing the cons.
And so if you got your way,
I guess my question is, what would the ideal system look like? And I identified a couple of things I'm going to ask both of you to talk about, but there may be more, by the way, that I didn't even think of, but questions such as what sort of indicators of consent of the patient,
if any would we want or is everything up to the surrogate? I know that Bob was a registered donor.
Would that matter in your ideal system?
Would you limit it to non vital organs or could you take vital organs?
And then what sort of how. You in particular mentioned a variety of impediments that in some ways they're not necessarily laws, but they are constraints right now.
So things, things would have to be changed within the system, I think to enable the type of procedure that we're talking about today. And it might be helpful to just have some indicator of what some of those things are.
Right. Like the way that we report someone who dies shortly after a donation or something of that nature. That would sounds like that would need to change.
So I'll just get you guys kao. I'll start with you and then Kathy will come to you and just tell me a little bit what your ideal system would look like.
Thao Galvan: Okay. I'm glad you asked this because I think about it a lot, what I would want.
I think that,
you know,
I'll let Kathy talk about the consent of the patient. I think she's the best person to answer that question.
But as far as eligible donors,
eligible organs, you know, in my mind, in recognizing how long it takes to create systems changes, I feel like you have to get as many people onto your side of the fence than not.
And so there is a practicality in the way I practice, both philosophically as well as like medically.
And so in my mind, I think that as long as we can adhere to the dead donor rule, which I do know that there's a lot of consternation about the dead donor rule itself,
but I think that in order for us to successfully do this with the most,
with the most support,
I would say that we would have to limit it to non vital organs, at least initially. If the future holds something different in 50 years, that's wonderful and fine. But right now I think that most people would be only comfortable if you only took one kidney, something that they've seen before.
Right. We know that we can take a kidney from somebody. We know we can even take a segment of the liver from someone.
We know that there are risks involved, but we've seen it before. And I think that familiarity allows for some comfort that kind of wards off some of the repugnance that this can bring about.
And so in my mind, first off, I would name it the Osterreider rule, something that allows for all of us to be able to donate in this way. Because I think it would honor Mr.
Osterrider and also his family for all their years of support of this issue.
But what I would imagine is that it would take a huge kind of a work group. Right. Designated by the government. Right. It would have to be hrsa and they would have to have representatives, including Optna.
We would need ethics ethicists, we would need community members like Mrs. Osterreider. Of course,
then we would need lawyers, which is why I'm here trying to fight for this on your part.
Kim Krawiec: We invade every element of your life, whether you want to hear or not.
Thao Galvan: Well, I've said this to you before and I still believe it. In order to care for people, you must care about the laws that govern them. And I think it's true.
And so this is why I find myself in very foreign waters. But I'm happily here because if we had a work group, we would have surgeons, certainly, and intensivists. ICU doctors are vitally important in this dialogue.
And I think that it's probably to their frustration that they're not more included, but I think that their thoughts, I mean, they're the ones practicing this medicine. They're the ones determining death.
And those are the ones that are calling the opo them and the nurses. So ICU physicians, ICU nurses have to be at the roundtable.
But I don't think it's unreasonable to create a lot of barriers. People talk about slippery slope. This is. Look at the way you slope that. Okay? It's a slippery slope.
That doesn't mean we shouldn't venture further. Right. So just create friction, just friction here, friction there, friction here, so that everyone is comfortable every step of the way. There's been publications in the media about issues where there wasn't adherence to the protocol.
But that doesn't mean the protocol isn't good. Right. It's certainly anything can be better and improved upon. But if there is a sound and sturdy protocol, if this, then that, if the patient bleeds, then we do this.
If,
if this. It's how we discuss this with the family in great detail, enough so that they understand the risks that they're taking on, but also so that they're comfortable with the decision despite it all.
So I think that we have to have incredible transparency, a really robust work group of people who want to create change,
but in a way that's very sound and safe.
And then I would imagine two or three pilot programs and high performing opinions. OPOS is really what you need. You need a surgeon who's licensed and who will work with the OPO who can procure these organs safely.
And then once we have executed a few of these a number of times, and it has been done in the past, it's just been court ordered. It happened to have happened where, you know, someone died in a motorcycle accident and their cousin needed a kidney.
And then they had to go to court to say, well, this is okay. His cousin would have wanted to give this to, you know, so this is something that's happened.
It's not even brand new, but if we can standardize it so that in a way that's familiar with people who already practice the medicine and who have a say in how the protocol is created, I think it could be very successful.
And I'm telling you, there have been papers that have said that you can create like 30,000 more transplants. 30,000 more transplants. We have a wait list of about 100,000 people.
Only half of them are served. Not even half of them are served every year. It's growing. Both are growing. Even DCD donors are growing. But we have to keep up with that log.
That's a huge log.
And so I. I have full faith that something like this would be a profound change in modern medicine that doesn't require robotics or AI or, you know, technology and tricks.
It's. It's something that we have staff and space and resources to do. We just have to have the earnestness to do it,
you know, honestly,
with transparency and rigorously.
Kim Krawiec: Thank you. I want to emphasize this was a great point you just made, that this has been done before.
Right. It's not like we're proposing this to do an entire. A thing that nobody's done before or that everybody who's looked at it has said, no, no, no, no, no, this has been done.
It's just that the barriers to doing it are so substantial that it can't be possibly be scaled.
Thao Galvan: Right. And actually, I did answer one of your points. Right. You mentioned. And it's a big point point. Currently, if you're a living donor hospital and you're a living donor dies, then you get a disincentive.
Right? You get inspections by CMS and all. You know, a lot of people are looking at you because it shouldn't happen. It happens, but it shouldn't happen.
And so we obviously have to create policies and protocols that allow for that. That, in fact, I would argue should incentivize programs to try and make an Oster rider donor.
And so there are, like, little nuances like this that I think a work a robust and knowledgeable work group could really overcome.
But yes, to your point, there are policies in place that could actually act as disincentives for this.
Kim Krawiec: Cathy, what would your ideal system look like?
Kathy Osterrieder: First of all, I want to say we are not doing this to have an osterator role named for us. So, you know, definitely not to get the attention.
Thao Galvan: That's an idea. I think it was, and I think.
Kathy Osterrieder: I cried when you told me that.
But the ideal,
I think, would definitely. I mean, the easiest would be if the donor is already registered.
The.
The family member that's able to give consent for other medical procedures would be the same person that would give consent.
I totally agree with Sal that one kidney and possibly a part of a liver,
definitely non vital organs.
I firmly believe that only God knows when your time is up on this earth.
So heart, lungs,
I wouldn't want to be any part of. And I think I can speak for my kids that that's not what we're looking for.
And the other.
It was very clear to us that the decision that we were making was to remove Bob from life support.
And that decision was not going to change after an imminent death donation.
You know, it was made very clear that we couldn't do organ donation.
And then,
you know, in three hours, change our mind.
So somehow there would have to be protocols, I think, for that, that the family would understand that it's not a decision that could be changed.
And as a family that went through this,
we knew there were risks,
but we all understood and were going off the medical professionals.
But also our own observations that he wasn't going to recover.
So if something happened in the operating room during a donation,
we would have been able to accept that because we knew we were at the end of the line with him.
But I can tell you that while the Oregon Procurement Agency was pursuing the idea,
they were two of my best days,
I think, because I felt very at peace that we were doing the right thing and something good was going to come out of a horrible situation.
Sorry. Take a deep breath.
And I wanted to say also that one of the things Bob would say would be sometimes you have to think outside of the box.
And I think that's what we were doing,
thinking outside of the box.
And I think he'd be proud of what we were doing.
Kim Krawiec: This is a first.
In five years of doing the podcast, I've never cried on it before,
so that's. It's a first for me.
Thank you for sharing that, Kathy. That's really.
That's really meaningful and really important.
The in conclusion I want to just ask each of you if there's just one thing that you want because we this has been an emotional and a complicated podcast because it's a lot of medical procedures and terminologies that some listeners won't be familiar with.
So if they forget everything that we've said today and just remember one thing,
what would it be?
So Tal, I'm going to start with you and we'll let Kathy have the last word of the day.
Thao Galvan: Well,
you know, if I could speak to the public and really to transplant professionals, intensive care,
healthcare workers,
you know, I believe that the public's trust goes both ways.
I think we should honor the values that people have in their passing, just as we do in their living.
And we are stewards of their legacy.
And I'm afraid that in our apprehension to do no harm, we may in fact be far from doing good.
And so I would encourage my peers to have to be brave and to be courageous and to do the right thing. And I think that this is part of doing the right thing.
Kim Krawiec: Thank you Kathy. Last word goes to you.
Kathy Osterrieder: I just hope someday that when I Google imminent death donation I can read that a family was able to fulfill their loved ones wishes and maybe I'll see a blog post that a person that was waiting for an organ for their loved one received an organ because of imminent death donation because then I'll know our efforts weren't for naught.
Kim Krawiec: Thank you both so much. This has been wonderful. It's been really educational and also very meaningful and I thank you both for coming here and sharing your thoughts on this today.
Thanks a lot.
