Navigating Organ Donation Discussions: Toby Campbell, Nikole Neidlinger, Samantha Taylor

Eric 00:16

Welcome to the GeriPal Podcast. This is Eric Widera.

Alex 00:19

This is Alex Smith.

Eric 00:20

And Alex, today we got a new topic we haven’t talked about before.

Alex 00:25

We were delighted that Toby Campbell reached out to us with this suggestion for this podcast because this is such great topic. So Toby is a palliative care doc. He’s an oncologist. He’s a physician researcher. He’s chief of palliative care at the University of Wisconsin. He is the host of Extraordinary Conversations, a podcast about this topic, which is, today, organ donation.

Eric 00:48

Organ donation is our topic.

Alex 00:50

And also host to the Palliatively Speaking podcast where he interviews experts in palliative care. Toby, welcome to the GeriPal Podcast.

Toby 00:58

Thank you so much for having me.

Eric 01:00

And Toby recommended two great people to be with us. Who are those two great people?

Alex 01:03

Great people. The first is Samantha Taylor, who is a donation support specialist. We’ll learn what that means. And trainer of donation support specialists and is trained in social work. And Samantha is at the University of Wisconsin organ and tissue donation program. Sam, welcome to the GeriPal Podcast.

Sam 01:22

Happy to be here.

Alex 01:28

And finally, Nikole Neidlinger, who is an abdominal transplant surgeon and medical director of organ and tissue donation at the University of Wisconsin. Nikole, welcome to GeriPal.

Nikole 01:39

Thank you, Alex and Eric, Nice to be here.

Eric 01:42

So before we go into the topic of organ donation, we always request a song. Toby, I think you have a song request for Alex.

Toby 01:49

My choice for a song is Butterfly by the wonderful Jon Batiste. I chose this song because it’s a song about. About transformation. And organ donation and transplantation especially is really about transformation. Right. From, you know, from death comes life.

Eric 02:07

That is more apropos than Butterfly by Crazy Town,

Eric 02:14

I don’t think would fit this podcast. So…[laughter]

Alex 02:31

(singing)

Eric 03:40

Lovely request.

Alex 03:41

Lovely song. I recorded that with my wife Cindy on the piano last night. So for those of you who are not watching on YouTube, you get to hear that version. Thank you, Toby. Beautiful song.

Eric 03:52

Okay, so we have done podcasts on brain death. Heck, even if you take, like, the palliative care boards, there’s questions around brain death. I Don’t think there’s ever a question on organ donation. I don’t think there was anything in our curriculum around organ donation, both geriatrics and palliative care. I don’t think it’s even. It was in my residency.

I don’t even know what my role is other than calling up the organ tissue donor network when I suspect somebody may be close to death and we’re withdrawal life sustain treatments or when they die in our hospice unit. So, Toby, I gotta ask you this question. What in the world, as an oncologist and as a palliative care doctor, made you start thinking, oh, I want to do a podcast on organ donation.

Toby 04:37

I mean, something like 15 years ago, Sam Taylor, who’s over that way on my screen, knew that I was doing communication skills training at UW just on bad news things that you guys are familiar with. And she brought this truly extraordinary conversation to me, which is the organ donation consent conversation, wondering because they had a huge challenge of training someone at hospitals across our whole network, which is mostly the state of Wisconsin. So in, in working with Sam and helping them think through how do we teach people communication skills?

I came to have a deep respect for this surrogate decision making conversation. And I called the podcast Extraordinary Conversations because this is a one off conversation. In every other decision making conversation about a medical therapy or surgery, the procedure is intended to benefit the recipient. In this extraordinary conversation, it’s intended to benefit someone else. So that makes it a one off conversation, which is why you need to train on it and why it feels very strange to pretty much everyone who participates in it unless you are really practiced at it.

So I came to this because Sam Taylor asked, like, how do you teach people hard to have hard conversations? Um, not how do you, but how do I do it? Um, and then I worked with her over the last 15 years as we thought through their strategies, um, just for how to teach people to do it.

Eric 06:03

Sam, how long you been a donation support specialist?

Sam 06:07

Well, I’ve been with UW Organ and Tissue Donation for 15 years. Like Toby said, we connected very early in my career here. Interestingly, when I first started working with him, we were training our hospital partners, nurses, respiratory therapists, chaplains, to have these really challenging conversations.

And so I did that for, gosh, probably four or five years. And then we transitioned and built a program where we have trained specialists at our organization that travel to all of our different hospitals and have those conversations. So I’ve been doing that for the past nine, 10 years. There was some overlap between when I was primarily training people. And when I was primarily having the conversation, what got you.

Eric 06:45

What got you into the field? Like, was this just happenstance or did you do this on purpose?

Sam 06:51

It really was just happenstance. I think you just. You fall into the profession you’re meant to be in. Right. And I actually started my career in hospice social work, and so I worked in hospice for a couple of years, and I needed to make a career change, and I found the position at UW for this role of training people to have these hard conversations. And I thought, I’ve been working in this field of hospice, talking to these families that are facing end of life and end of life choices. It feels very transferable.

And when I got here, I was like, oh, it’s not even just transferable. It is like, this is where I belong. I’ve always believed in organ donation in my heart. It’s always something that I have supported. And so when it crossed paths with personally how I felt and professionally, an opportunity to give to the profession, it just kind of fell into place.

Eric 07:38

And I’m guessing nothing ever just falls into place for an abdominal transplant surgery. How many years of TR.

Nikole 07:49

I’ve been doing transplant surgery for 18.

Eric 07:52

Yeah, 18 years. How did. What got you it? Like, did you know this before going to med school? Or did. Was there.

Nikole 07:59

No, I didn’t. I didn’t. And I. I did residency out in the bay, but I. I did a transplant fellowship here at uw, and literally it was my first day of the fellowship. And my mentor, slash, you know, boss slash godfather of surgery at the time, told me that I was going on an organ procurement. And I was like, sure, I’ll go. You know, it’s my first day. I’m ready to go. And he said, you know, when you get to this procurement, you need to meet the family, you know, who’s just lost their person. And you. I want you to thank them and put a face to this process and, you know, answer their questions and be a human being.

And honestly, I was terrified about it because, you know, I was like, I’m a surgeon. Like, we’re not that good at grief. What am I going to say? These types of things. But he was like, if you were doing a hernia repair on somebody, you would talk to their family. I’m like, yes. He’s like, so this is how we do it here. So you need to speak to them, and we’re gonna help you, and it’s gonna be great.

And it was great. So, like, over. Over the course of my fellowship for two years I probably met, I mean, 200 donor families and they, they all had a very similar message about, I mean, not all, but the vast majority about legacy building and generosity and sometimes biologic legacy, but sometimes, sometimes this is, you know, the only time I felt like I had any autonomy in a week that I never anticipated and had no idea was coming. And I thought it was so cool. Like, I thought, like, organ donation is, I think everyone knows that it’s good for recipients because the media shows that and does a great job and it is good, great for recipients, but it’s good for families.

And I didn’t know that. I didn’t realize, like, what, what an end of life legacy it brought with. And I, I came really interested in it. So I’ve been working in organ donation primarily ever since I still do transplant, but I kind of consider it my side gig a little bit. I love, I, I love, you know, the organ donation work is, is a lot of fun.

Eric 09:55

And how is it good for families? What, what have you seen?

Nikole 09:58

Well, Sam can answer this too, so. But I have seen, you know, we have people who come to work for us who were in previous high powered corporate jobs and their person became a donor, and it was so moving for them that they leave their job and just want to be advocates and they want to, you know, speak to others about their experience. We have, as you enter our office here, we have, you know, this huge, gorgeous reclaimed wood backboard. And it says, you know, our son was a donor.

Saved others, but donations saved us. And it’s a quote from a donor family that’s at the entrance of our office. And I think those. For families, the ability that their person’s life mattered like they lived on. We, we had a newborn baby that was a donor. The baby lived alive in, you know, days, but then the fact that the baby was sort of living on in another was so moving for families. Yeah, these are the types of things that we experience working here. But I, you know, that’s my experience. I think Sam has a lot more friends on it than I do even.

Sam 11:00

But I think you said it beautifully. And I think, you know, specifically that quote that’s in the front of our office that mom had been volunteering for us and raising money for our organization and doing all of these wonderful things. And we kept saying, thank you, thank you so much for doing all this. And she said, no, you don’t understand. Donation saved me. She said, you know, my son saved lives through organ donation, like Nikole said, but organ donation saved me.

Without her son Becoming a donor, she said, I would have never been able to make sense of what happened to him because he died in a very senseless and violent way. And she said, I would have never been able to make sense of what happened and why organ donation saved me. And that’s why it’s what we see every day when we walk in. Because like Nikole said, we are here to help those recipients that otherwise don’t have a chance at a future. You know, their last chance for treatment is a transplant. But beyond that, those donor families are walking into a situation they were not expecting to walk into. They had breakfast with their loved one the day before. They kissed their husband goodbye when he left for work, and now they’re in the ICU deciding to take him off a ventilator.

They are not expecting to be in these situations. They don’t have months and years and weeks to prepare for saying goodbye. And when you’re in that crisis situation, being able to look at a situation you don’t have any control over and saying, okay, this happened, we can’t change it. But through this, we can actually prevent other families from going through a similar loss. And that’s what they hold onto and that’s what they cherish and it’s what they move forward with as they grieve. It doesn’t make it easier to grieve, but it changes their grief trajectory, which is quite special.

Eric 12:40

So, Eric, go ahead.

Toby 12:43

I would just quickly add that I come to this as a palliative care physician and had no access to these patients other than the occasional experience, generally speaking, when their loved one was not a donor. Right. And then my team would pick them up to for end of life care. So my access was in talking to donor families. I was very nervous to interview these families, and I interviewed about a half dozen donor families through this project. You can hear their story. That’s episode two, the donor families.

If you’re curious what they experience and what their story is, you can hear that in our second episode of this podcast. But for me, I was super nervous because I thought, I’m asking something of them, right? I’m taking from them. And I wasn’t sure what I was giving back, but all of the families actually, after the interviews were over, were so appreciative of the opportunity to tell their story. And what comes through is these ideas of legacy that are really potent and powerful. And I was surprised by how much it helped their grieving experience.

Eric 13:46

I got a question then, Toby, is since we’re doing a podcast to healthcare professionals about Organ donation. Why is this important that we learn about the process, or is it important at all other than making sure that we check that box off on our DMV registration?

Toby 14:06

Well, I think there are a number of reasons. It’s important on a personal level. It’s important that you’ve talked to your people, whether you’ve checked the box on the DMV or you haven’t checked the box. I think what’s most important is that your people know how you feel about organ donation. Because I met with families who had made the decision, and I talked with some who had not whose person had made the decision and elected it. And those are really different conversations, actually, and different feelings emerge. So what’s really important, I think, is that you’ve talked to your people.

So there’s one on the personal side and then there’s the other on the professional side, which is to recognize how different this is. And, you know, as. As a palliative care clinician, I have sometimes felt, you know, I don’t know, weird, squeamish, awkward about these conversations. And I certainly have talked to intensivists and people in the ICU who felt very strange about it. And I think it’s important for me, the discovery that I made in this project, which is why it feels squeaky, why it feels weird, and it’s because it’s such an extraordinary situation. It is a literal one off situation where we are providing critical care to a donor in order to allow them to donate.

But we are doing lots of things to this person that we would not otherwise do if we were proceeding with withdrawal of life support. And it’s important for people to realize that it’s okay that they feel strange about it, but to understand why and what’s at the root, that it is goal concordant care, but it’s goal concordant in line with benefiting someone else. And that is totally different than what we normally do. And that’s why it feels strange. And I. So I came to a great deal of peace about the whole process through this deep exploration.

And I should say, you know, Nikole and the transplant program, like, they helped me in terms of connecting to donor families, but like, you know, I funded this project entirely through philanthropy. And so I feel like I can speak to this without, you know, bias or conflict, because actually, the transplant program was nice to me, but didn’t, you know, at least financially help me in any way.

Eric 16:09

So I got a question going back. I’m gonna turn to Sam and Nikole for this. Like, what is our role as people who care for seriously ill patients, but not part of the organ procurement organization or transplant surgeon. Are we just calling the organ procurement

Alex 16:26

organization or do you want us to say anything? And if so, what? And if not, why not?

Sam 16:32

Mm, good question. Do you want to start? Nikole? Go ahead.

Nikole 16:36

Sure, sure. I can, I think, I mean, I think the palliative care physicians that I know and work with, including Toby, are master communicators. So I think from an organization perspective, if all of the physicians that we were working with had the level of knowledge about organ donation and were master communicators in that way, I think this would be a different answer. But historically, what we have said is that we would prefer if the organ procurement organization specialists, folks like Samantha, have the conversation with families.

So we let hospitals know what patients we want them to tell us about, and when they do, we have a really important team conversation with them about what is this person’s prognosis, what does the family believe the future is looking like? Like what does the family understand about their illness through those conversations? We, we decide and sometimes it’s best for the team to talk to the family together. But I think when the donation support specialists are doing that, it’s because folks like Sam, and I’ll let her say something, are having these conversations literally hundreds of times per year. And as Tony Topi mentioned, it’s like a one off.

So the kinds of questions that physicians are going to get are going to be even the busiest hospitals, the physician seat two, you know, personally, two donors a year maybe. So I think the, the point of having the Oregon procurement organization involved is to give the families an accurate picture of what it looks like. What are they saying yes or no to? Do they have the ability to say yes or no or has that already been decided? Can they meet recipients? How long does this take? What organs can be like? These are the types of things that they ask.

So that’s why we like to have the OPO involved. I think I have seen a lot of really great, well intended physicians turn people off to organ donation by saying things like, by law, I’m required to tell you about organ donation. So as you may imagine, that’s less well received in certain cultures. So I think I understand for physicians that it probably feels like exclusionary and like, who are these people to come from the outside and take over this relationship that I have with patients? So I think there’s opportunity here. Honestly, I think there’s opportunities in organ donation.

Eric 18:52

Do you think that’s also helpful from a conflict interest Perspective like your medical team is the one trying to keep this patient alive. And when we think about organ procurement, it may be helpful to have another team talk about that who’s not involved, directly involved with patient’s current care.

Sam 19:11

I’ve got a thought.

Toby 19:13

Yeah.

Sam 19:13

My, my thoughts are as palliative care physicians or critical care physicians, you know, for those, those patients who have some sort of trauma happened and maybe palliative care doesn’t become involved. What that physician has been doing every step of the way has been giving the family information and talking about choices and options.

Eric 19:31

Yeah.

Sam 19:32

And when it gets to end of life, including organ donation, there’s information to be given and there is potentially a choice to be made. If the person hasn’t registered for themselves or there is information around that person’s decision, their advance directive decision, their end of life decision. And the family deserves that information kind of in the same way they’ve been getting it all along. So I feel really strongly that the care team has a really important role to play in preparing families for the next conversation.

They don’t have to be the ones doing them, and honestly, they probably shouldn’t be, but preparing them, that we are going to have more conversations about what end of life will look like, could look like choices. You might have information you should have, kind of whatever the setup is, depending on the situation. We really want the care team to be the bridge because they’re the ones that the family trusts. They’ve never seen me before.

Eric 20:22

Do we bring up organ donation in that preparatory meeting?

Sam 20:26

I mean, I think it depends. I don’t ever want to say like, no, absolutely not, don’t. But what the risk of that is, is if a family reacts and says, nope, don’t even bother. I don’t want to hear about it. I don’t want to talk about it. We’re going to need you to be able to say, I understand that this is really hard to talk about right now. And it might not be something that you thought you were going to have to think about, but it is important that we talk about it. I will be here with you. I will support you. It’s important to keep that door open.

Eric 20:49

Yeah.

Sam 20:50

What happens sometimes is kind of like I think Nikole said, if a physician brings it up and the family says, nope, we don’t want to talk about it, the physician calls us and says, guess what? They don’t want to talk about it. And now that family has an open, made an informed decision, or what if their loved one has already made that decision and it wasn’t the family’s choice in the first place. So there’s a lot of walk back that you have to do in that situation. Can families try to avoid that?

Eric 21:13

Can families revoke what the patient put on their driver’s license or registered?

Sam 21:18

They can’t. No, they can’t. It’s a legal decision. And how it kind of falls categorically is it falls under gift bond, which is similar to the decisions you make when you write a will. So your family might not agree with who you’re gifting your fortune to, but that is your choice. And so when somebody chooses to give their gifts to somebody else post death, that is their choice. They are gifting that. It isn’t. And it isn’t an informed consent decision. It’s a gift law decision.

Alex 21:48

That’s so interesting. It’s so different from the paradigms we normally think about. You know, advance care planning is a guide. An advanced directive is a guide. The surrogate can generally make have some flexibility in decision making. A pulse, right, could be modified by a caregiver if they feel like something else is in the best interest of the patient at the time. This is not. This is different. This is binding. This is like a gift. And you probably have had circumstances in which families have over are trying to override this.

Sam 22:20

Yeah, yeah, absolutely. And there are a lot of reasons. You know, a lot of times families don’t know, they didn’t know that their loved one made that decision. They feel excluded from the decision. They feel embarrassed that they didn’t know what their person wanted. Maybe they don’t believe in it for themselves. A lot of the resistance from families though, is actually just masked grief. They are just grieving and reacting to a situation they don’t want to be in. Which is why it is so important that we honor the decision that the person made.

Alex 22:47

And one of our palliative care fellows, Isabel o’, Brien, who trained in emergency medicine before doing palliative care fellowship here at ucsf, she actually changed her donor card to remove the donor from her driver’s license because she didn’t want to completely tie the hands of her family when it, if it came time. Though she strongly supports donations, she said it’s up to them. They got to live with this decision. She wants them to have a choice,

Sam 23:11

which is totally fine to do. And we’ve heard families say that as well as they say, I believe in organ donation. You all know you that I want it, but I want you to have that choice when the time comes. There are other people who Say, I know that my husband, brother, aunt, grandmother will never do this and it’s important to me, so I am making the choice. So we have people on both sides of that coin, which is why it is such an important conversation, a significant decision.

Eric 23:37

And importantly, it falls under gift law, right? Not healthcare. Like advanced directives is because the patient is dead, right?

Sam 23:46

Correct.

Eric 23:47

So I can, I can imagine there’s donation after brain death, patient is legally dead versus donation after circulatory death where they’re not dead yet, but you’re having these discussions about when they will die, what, what that will look like. And I can imagine that is one where the family members input is actually kind of needed because they’re still alive. Is that right?

Sam 24:13

Yes. Yeah, you’re absolutely right. That’s where there is a conversation around. This is what your loved one chose to do after they’ve died. They haven’t died yet. And so what that means is we need your support to do these tests. We need your support to, you know, to walk this path in order to honor that decision. Now if at that point a family says we don’t want to do any of those things, it becomes a conversation between the family, the hospital and us to decide what kind of next steps are we going to take.

Because nobody’s intention is to ever make a situation harder on a family. We never ever, ever want to make a hard situation harder. And we have a responsibility to honor that person’s decision. And so how can we meet in the middle? Maybe it’s timing, maybe the family’s saying, I just can’t do this anymore. I cannot see them on the ventilator any longer. Okay, how can we meet in the middle and say, look, we can make this whole process go faster than it normally does. Maybe there are less recipients that can be helped, but we can still honor their decision and we make it all happen within 12 hours instead of the typical, you know, couple of days that it takes.

Alex 25:16

Could I ask you, Sometimes we care for patients who are, you know, ventilated, they’re intensive life support and they decide, I don’t want this anymore. You know, like let’s, let’s stop the life sustaining treatment, focus on comfort. And they still have the capacity to make decisions. You know, maybe they’re using pointing at the board or using the eye machine thing or, you know, do you ever talk to the patients themselves in those circumstances?

Sam 25:43

Yeah, we do, we do. I don’t want to say frequently, but more frequently than we did when I started 15 years ago. You know, end stage respiratory distress. ALS is a great example. So we absolutely do. We’ve gone to people’s homes who are kind of end stage ALS and talking to them about what organ donation would look like, if that was what they wanted, helping them understand they would have to go to a hospital setting. We’ve talked to people in hospital settings who are transitioning to comfort care.

Eric 26:12

How do you find out about these people? Like, they’re in their home with their.

Alex 26:15

Do you rely on, like, hospice to call or palliative care to call, or ALS providers?

Sam 26:20

The ones that call us from home usually have said something to somebody on their medical team, their hospice team, their primary care team, and then they reach out to us. So those ones that are calling from home, those are very rare. They really are. And all of the stars have to align for somebody to be able to be a donor hero in that way. But it is possible and it’s worth a conversation. I think that’s what it comes down to is when somebody is coming to the end of life and they are trying to be in control of as much as they possibly can, and they have questions about if they could or could not donate. They deserve that information.

Alex 26:53

But you want, you want them to bring it up, the patients to bring it up. You wouldn’t advocate, like on this podcast to our listeners that they raise the issue of organ donation with patients who are nearing the end of life, in case.

Sam 27:07

That’s a good question.

Alex 27:08

Yeah.

Sam 27:09

I think when, you know, when you’re filling out advanced directive paperwork, there is a section about anatomical gifts. And so even if you’re not suitable to be an organ donor, you know, even if you don’t die on a ventilator, very few of us, by the way, right. Are going to die in the way that makes organ donation possible. 1 to 2% is the statistic. People will die in a way that they can be an organ donor, but there is still the opportunity for tissue donation. And so having a conversation with literally any person that is going to face death, which, by the way, is all of us, right. We all should be thinking about not if it’s my time. When it’s my time, if I could give these gifts anywhere from all of my organs to one cornea, would I want to do that? Yes or no.

And does my family know? And then you document it. And then when the time comes, we figure out what is the most appropriate. Is organ donation appropriate? Yes or no. Is tissue donation appropriate? Yes or no. Is eye donation appropriate?

Alex 28:04

So you would advocate that our clinicians who like caring for older adults caring for people with serious illness. Have that conversation. It’s not on any advanced directive form I’ve seen. Maybe it’s on like a Wisconsin form.

Eric 28:14

Yeah,

Toby 28:16

it’s a standard item on the Wisconsin form I see as it on

Sam 28:20

most of the hospital specifically forms and a document called Honoring Choices, which I think multiple states use, at least in the Midwest.

Eric 28:27

So I think this is where it gets kind of confusing. Confusing because on one hand, like, I do see the value of actually bringing this up earlier on, but I think for some of us in our training and the messaging that we hear is leave the requests or an organ donation to the experts, like, who’ve been trained in this train. So, like in our hospice unit, we don’t bring this up.

Sam 28:53

Yes.

Eric 28:53

When somebody dies, we call the organ tissue donor network. And then even, like, I’m not even sure, like, do I, do I tell the family members that they may call the organ tissue donor network, may call them up, or do I just wait for them to give them a call?

Sam 29:08

Yeah.

Eric 29:09

Any thoughts on that?

Sam 29:11

Yeah, I think we’re kind of talking about two buckets because there’s the immediate death is imminent bucket. Right. Like, you are in the unit, you’ve got a person who is on life support or actively dying or somewhere in between. That absolutely is the bucket that you should leave the conversations to the organ donation professionals.

Eric 29:28

The organs. When we’re thinking about organs versus tissues,

Sam 29:31

it sounds, yes, we’re thinking about organs. Like, those are the ones where you should, you should prepare the family that they are going to be end of life conversations. Right. Just prepare them for additional conversations. But yes, leaving it to the organ donation professionals. Beyond that, if you are just planning, just end of life planning with a person and you’re even talking about, gosh, would you ever want to be in a nursing home? Would you ever want a feeding tube?

That’s where I think it is appropriate as a provider to say, how do you feel about organ and tissue donation? If they’re like, I don’t know, then you direct them to some resources. They don’t have to make that choice. But I think it’s good to get people thinking about it. So the first time they hear about it, the first time their family hears about it is not when you’re in that imminent situation trying to figure out what to do.

Eric 30:13

Okay, I got another question for you, Nikole. You’re a director of a Oregon Procurement Organization, OPO. Right. 1 to 2% of all deaths I just heard are possibilities. But I’m guessing that we don’t always call the OPO for that 1 or 2%. Like who are the patients? We should make sure that we’re always calling the Oregon Procurement organization before they die.

Nikole 30:38

To be honest, I do think most acute care hospitals are making referrals. Like it’s very, I would say the government is very supportive of organ donation.

Eric 30:46

Yeah.

Nikole 30:46

As the government supports Medicare, supports end stage kidney disease system. And I think they’re very motivated to get people transplanted who can because it’s a better quality and quantity of life. But the, the, the 1 to 2% comes from the fact that you have to, to be an organ donor, you have to die in an acute care hospital on a venture. So I think that’s not a lot of people. So I think that’s where that statistic comes from. So we generally advise our hospitals that the acute care hospitals. So we’re generally not doing organ donation outreach to hospice, for example, because generally those patients aren’t going to die in an acute care hospital. An event.

Eric 31:24

So it’s interesting because I think we do pretty good with brain death. We were, we were talking about in our group and I think we were all a little bit thinking about, oh wait, what about the circulatory deaths out there, which is a growing number. Right. Like, definitely.

Sam 31:39

Very much.

Eric 31:39

Like I have a template for a removal of life sustaining treatments that I always use and that includes calling the tissue donor network. But if I’m not on it, it’s other people using that template or other people making sure that today was the

Alex 31:54

first time I had heard of it.

Nikole 31:57

Toby, probably.

Sam 31:58

Are you.

Toby 31:58

Toby, Am I what?

Nikole 32:01

Are you calling a PO on?

Toby 32:04

No. You know, because generally speaking, Alex and Eric, these are not my patients. Right. You know, these are in, they’re in the icu. Maybe we’re a consult. I might, I might engage with a patient and family. It just as Sam suggested at the time when all of these things are coming up. But I am reminding you these aren’t our patients.

Eric 32:23

But I am reminding the ICU team to call and because I don’t know, I feels like it may fall through the crack for those circulatory ducts.

Sam 32:32

Every OPO has something that they call clinical triggers, which is, are certain parameters that if a patient meets those parameters, that hospital should call the OPO regardless of the treatment plan. And so should, should. And part of the OPO’s responsibility is to make sure that those hospitals are making those referrals because if they don’t make the referrals, we aren’t aware of those potential patients and we can’t have those hard conversations. So keyword yes, should.

Alex 32:58

And that’s a should as opposed to after the patient dies. It’s a must call. Right.

Sam 33:03

At least after the patient dies. Yeah. The opportunity for organ donation is no longer an option. But tissue date tissue donation still is. Yeah, yeah.

Nikole 33:12

But we do record reviews on. On patients who died on Vincent Acute care hospitals. And they are referring. I mean.

Eric 33:17

Oh yeah.

Sam 33:18

At least in our service, Erica.

Eric 33:20

Oh, that’s great.

Alex 33:20

That’s great.

Sam 33:21

Yeah.

Nikole 33:22

And in California. I used to work in California. I think they are referring them sometimes the unit assistant, it’s not always a physician.

Eric 33:30

So everybody on event that you’re expecting to die, we should be calling the Organ Tissue Donor Network or the opl.

Sam 33:38

And even, I’d say even say patients that you don’t know are going to die yet, like patients who are on a vent and maybe have a very low GCS or have a neurologic injury that has been confirmed or something like that. Like those are kind of the triggers because many of our patients that are referred to us recover and get better and improve. We don’t pursue every single referral that comes our way.

Eric 34:02

So let me ask you this, Sam. Let’s say we call you. There’s somebody who looks like they’re not going to survive this ICU stay. They’re not brain dead. What’s your conversation with the family like? When do you get involved and what do you talk about?

Sam 34:19

Good question. So first and foremost, our clinical team is kind of following the background to make sure that they’re medically suitable. Because we never want to have a conversation with a family about a patient who isn’t medically eligible. Maybe they have something in their history that rules them out. Or it could be a number of things, but that’s the first thing is we want to make sure that we they are an appropriate candidate.

Second thing is we are regularly in communication with the care team to find out how is that family doing. You know, just because we told them they’re not going to survive doesn’t mean they’re ready to talk about what that means. And so we’re very thoughtful about the timing of that conversation. To make sure that the family has accepted the grave prognosis maybe is asking, okay, so what are the next steps? He would never want to live like this. My favorite is if you can’t climb up in his deer stand. He wouldn’t want to live. Right. Like those.

Those are the kind of clues that families are saying, I’m ready to talk about what’s next. And then what we do is we deploy somebody from my team to go to that hospital and sit down and say, okay, it’s time to have some hard conversations. This is what I understand about what’s happened. This is where we’re at. This is potentially where we’re going. And then kind of see how the family is doing and follow their lead. So that’s sort of how it starts at a high level.

Alex 35:27

So. And when I heard, as I was listening to the Extraordinary Conversations podcast yesterday, which is outstanding, and as Toby mentioned, that second episode where you talk, like, listening from the, the families of people who donated is just so moving, poignant, as is the first episode. You know, talking about these, these moments before they go into the elevator for transplant and, you know, incredibly specific emotional stories there. And one of the things that stood out to me that, you know, Toby, you wrote about and have talked about is the similarities and the parallels in the conversation.

This is serious illness conversation, like, amped up to the nth degree. And I was struck, like, the similarities, like, you go and you talk about praising the family who’ve been through so much. You have to build a strong relationship, like, immediately with them, and then you want to align with them around their goals. Like, this is not about getting to. Yes. This is about making sure they can live with this decision and have make an informed decision here that they can live with for the rest of their lives.

I wonder, Toby, if you could talk about, you know what, and then we can go to Nikole and Sam about the parallels. What you, what you saw was parallel and what we could learn from people who are having these intense conversations.

Toby 36:43

Yeah, I think, Alex, you’ve nailed it. It’s. It’s surrogate decision making. But the stakes are really high. And I think the clearest way you realize the stakes are really high is that this is a one, this is a single opportunity conversation. Right. Sam or someone like Sam is gonna get in this room. If they get in the room, they’re gonna get in the room and they’re gonna have one opportunity to do this conversation well, to do it right. And the consequences can last for, I don’t, I think, generations. Right. A family’s experience with this conversation, good or bad, could live on in that family for generations. And so the stakes could not be higher for what effectively is a serious illness conversation. Yes, but it’s a very specific one.

Sam 37:28

Right.

Toby 37:28

It’s a surrogate decision making conversation. Again, where the benefits are intended for a donor. Excuse me, a recipient so someone else. So that’s why they train on it, because it’s. It’s such an unusual circumstance and they have to really have their A game on. So it felt very much like palliative care. It feels very much like palliative care. I don’t conduct this conversation. I mean, I’ve. I’ve worked with lots of people and Sam, on the training, but I do not do this conversation myself. But I, like you, Alex, identify with it, and I really appreciated it. I mean, as a. As a student of hard conversations, this one is just really interesting.

Eric 38:07

Was there anything that you saw that the donation support specialists were doing that you said, oh, we should bring that into care of seriously ill patients outside of this setting?

Toby 38:19

Yeah. So I think there are. There are many great lessons. And as you guys pointed out, episode one is where we really dive into this conversation and talk to these professionals. But they are so elegant with their rapport building because they have no reason to be in the room, as far as the family knows. Right. So they have to, like, build rapport. So if you watch them build rapport, there is so much that they do with what I tend to call the first 60 seconds, which is like, you know, the front porch conversations. Like, how am I going to get. Am I even going to get into this conversation? So they are magic there. They are also magic.

Eric 38:54

Can I pause real quick, Sam, what’s your first 60 seconds look like?

Sam 38:58

It depends on what I’m walking into. Right. But I think that I. From my practice, some of the first things I do are find out who I’m talking to and just acknowledge the terrible situation that they are facing.

Eric 39:11

Yeah.

Sam 39:11

I think if you try to jump into anything else, who I am, why I’m there, tell me about your person that is all lost until you acknowledge, like, this is awful. You are not expecting to be here. Just kind of putting that out there, I think, is what brings people’s guards down a little bit, where they’re like, okay, they’re not. They’re not coming in with bad news or good news or any news. They’re just saying, this really sucks.

Eric 39:34

I think that’s a great lesson for us, too, because, like, far too often, like, in our training, it’s like we’re stuck in these, like, algorithms that we’re taught, but rather just empathize where the. Where their patient’s at. Build so much trust and rapport.

Sam 39:49

Yep. Just kind of call it like you see it. This is awful.

Eric 39:52

Okay, Toby, what was the other thing you were gonna say?

Toby 39:55

Yeah, they stay in the empathic space until. Until they’re ready to leave it. It’s a great testament to the power of empathic communication. The other that I think is really powerful, Alex, is how they guide families through memory making. So at end of life, these folks have a number of tools and strategies that they use to help people make memories that are amazing. In part because society’s still trying to catch up, right When. When someone dies in a quote unquote normal way. We have all kinds of social structures for how we interact with a grieving family and what we do around death and burial. This is a very different way of dying that is only a few decades old.

And so people like Sam have had to figure out what do we put in that time. Sam mentioned earlier that we’re going to ask families to wait a couple days. Sometimes longer, sometimes faster, but let’s say a couple days. And they are really good at coaching families who are what to do with that time. Maybe you want to talk about some of the great things you guys do there, Sam?

Sam 40:53

Yeah, sure. I think when we meet with families, their hospital stay so far has been uncertainty, tests, questions, not knowing what was coming next. And once we have that conversation about donation, we really help them see how now these next few days in the hospital can be very different. They can be not here at the hospital, we give them permission to leave. Some of them need to go home and tend to their farm and get their kids on a normal schedule and start kind of planning a funeral.

Those sorts of things we do when somebody dies outside of a hospital. The other thing we help them understand is this is their time to be with them. If they don’t want to leave in a way that nobody’s going to come in and tell you something has changed, most likely, right? We’re not going to wonder what the next test says or what it means. We’re not going to wonder if tomorrow will feel different than today, you know, what the end is going to be. So that time spent with that person can be different.

People can crawl in bed with their loved ones. We can do fingerprints, handprints, hand molds, locks of hair, print out EKG strips to get really cool tattoos. I mean, all these things that families don’t even know exist. I had a situation with a lady once who was the surrogate decision maker for her, for her sister who had adult children. And they had all gathered at the hospital to say goodbye. They were going to withdraw life support. And that lady was on the registry. She had made her donation decision. And so I Went in and I talked to these lovely people about her decision to be a donor and how that meant that she wasn’t going to come off of life support that day.

And they all were very much like, ugh. Like, that was not what we were expecting. And what. What do we do with this time? And I don’t even know what you’re saying. And I kind of talked through what I had just shared with you. And what the sister did was she spent the next two days painting her sister’s toenails and fingernails. She made her a traditional Polynesian headdress because they were Polynesian. She did all of these things with her sister that she didn’t know she wanted to do. And when it came time for the OR and I met with them again, she actually said, I didn’t know I needed this time. I had no idea that that was even an option for me.

And so it was a very healing experience for her based on the type of relationship she had had with her sister in the past. And so we just open up the door to, this is your time. How do you want to spend it? What does that look like? Some families treat like a wake where they invite people to come. They invite people to come and say goodbye. Some treat it as the most private, sacred time they’re going to have with their person. And so it’s not ours to decide, it’s just ours to say, this is your time. How can I help support you and what you want it to look like and feel like?

Nikole 43:34

Right.

Alex 43:35

So it shifts from a perspective of this is a, you know, a waiting period that’s out of line with what they would have wanted and prolonging their dying frame to. This is an opportunity to grieve together, to begin the grieving process. That this is a period of meaning making and processing and adjusting, and it’s a gift that your team can give the work with the family to experience over these last days or hours.

Eric 44:06

I want to be mindful of the time. I’d like to ask kind of one last question. This is a podcast directed at healthcare providers. Many of us are caring for people with serious illness. If there is one thing that you’d like those listeners to know about this process of organ donation and their role in the process or really anything about it, what would that one thing be? And I’m going to direct everybody. I really want to highlight Toby’s podcast because I think it’s great you go with Toby on one of these organ procurement missions. What’s the right word? Where Toby’s in the car recovery. So really encourage everybody to listen to it. But for our audience right now, I’m going to start off with Toby. What’s one thing that you want them to know?

Toby 44:52

I think for me, the one thing is that that’s the takeaway is the impact that this has on donor families. I could imagine the impact on recipients. I was stunned by the power that all the donor families attested to in terms of how honestly helpful it was for their grieving experience. So I came to feel honestly differently about organ donation. So it sort of changed how I thought about it. And so just such rich stories, especially for the donor families.

Eric 45:21

Thank you, Toby. Nikole.

Nikole 45:24

Well, I mean, to be honest, mine is very similar. I think you know, the story I told you about starting fellowship. I think as a physician, I didn’t know and I knew that, you know, some reg meant I had to call somebody and that people were gonna come and talk to patients of mine. And it was potentially gonna add time and work and complexity. And at the time when I was a learner, I honestly, I found it kind of annoying and off putting. But now that I have done the work and similar, what Toby said, like, see how it. It’s. It’s patient and family centered care and it lasts for decades.

mean, it’s so meaningful for them what, what it brings not necessarily to the recipients and, you know, San Francisco or Madison, but to the actual family in the actual community hospital or wherever. Like, it. It really matters for them. And I think, I think that’s what I wish that we could show physicians more often. I understand it adds days and complexities, but it really is patient and family centered care.

Eric 46:28

Thank you, Sam. Bring us home.

Sam 46:31

How do you top that? But I think to piggyback on all of that, sometimes the perception of having an organ donation conversation is that we’re asking for something from somebody. And in reality, we want to give families the option and the opportunity and the experience of what these other donor families have had, because not everybody has that. And I think by having that really important conversation and making sure that they get the information they’re entitled to, they can make a decision that they are happy about, long term, whatever that is.

Nobody wants to live in regret, especially when you are grieving the loss of somebody you love. So I think just making sure that we are not there to ask anything from anybody. We are there to talk about a really important end of life choice or decision that’s already been made and we want to know that they feel fully supported through that.

Eric 47:19

Well, I want to thank all three before we end. We got a little bit of Butterfly. We’ll see which version Alex plays.

(Alex) 47:39

(singing)

Eric 48:48

Sam, Nikole, Toby, thanks for being on the podcast.

Toby 48:52

Thank you so much.

Eric 48:53

We’ll have a link to Extraordinary Conversations podcast on our show Notes. And thank you for listeners for all your support.

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