SCCMPod-547 CCM: Modern Data on Organ Donation Equity

Dr. Madden: Hello and welcome to the Society of Critical Care Medicine podcast. I'm your host, Maureen Madden. I'm speaking with Dr. James R. Rodrigue, Ph.D., FAST, and Richard D. Hasz, M.S., about the article, Racial Equity and Family Approach for Patients Medically Suitable for Deceased Organ Donation, published in the December 2024 issue of Critical Care Medicine. To access the full article, visit ccmjournal.org.

Dr. Rodrigue is former Vice Chair for Clinical Research in the Department of Surgery at Beth Israel Deaconess Medical Center in Boston and is now Director of Data Research at New England Donor Services and is Professor Emeritus at Harvard Medical School. Richard Hasz is President and CEO at Gift of Life Donor Program. Welcome.

Before we start, do either of you have any disclosures to report?

Dr. Rodrigue: Dr. Madden, yes, this is Jim Rodrigue. My disclosure, along with Dr. Jesse Schold, one of the primary collaborators on the paper, did receive financial support from the Organ Donation Advocacy Group for our analytic efforts on this paper.

Mr. Hasz: Thank you for sharing that. The only disclosure I would have is I also serve on the board for the Association of Organ Procurement Organizations that collectively represents the 47 organ procurement organizations in the United States.

Dr. Madden: Thank you for that. I'm very excited to have you both here today and to discuss your article because I feel that when you talked about doing this work in racial equity, that there was a significant period of time that people were using data that was quite old and not representative of the current times. So I just wanted to ask, and we'll start with Jim, if that's okay, and then Rick, I'll ask you, what is a little bit of your background and that brought you to this work?

Dr. Rodrigue: Thank you for that question. I'm a clinical psychologist by training and I spent the last 35 years of my career working within transplantation, both as a clinician with transplant candidates and recipients, as well as donor families, and as a researcher with a research program funded by NIH, HRSA, and PCORI. This has been my career.

A great deal of my research program has been focused on organ donation and the experience of families who go through this process.

Dr. Madden: Thank you. And Rick, if you could tell us a little bit about how you came into this.

Mr. Hasz: Maureen, thanks for the opportunity to be with you today. This has really been the focus of my entire career. So I began in 1990 as a transplant coordinator whose job it was really to respond to hospitals to help determine suitability for donation, as well as to have that critical conversation with families who've recently lost their loved one and shepherd them through that donation process, really serving as a coordinator and then advancing through different management.

Now having the privilege to lead the largest organ procurement organization in the United States. This is a topic in terms of how do we improve our nation's organ donation system and making sure that we're representing everybody who's a part of that system has been an important part of what we want to focus on because we know that end-stage organ failure really spreads across all racial divide.

Dr. Madden: Thank you. Now I want to talk a little bit about this article. So racial equity and family approach for patients medically suitable for deceased organ donation.

I told you before we started the podcast that my clinical focus is pediatrics. So I have some very specific kind of differences because my population for the most part doesn't have or are not old enough to already be registered donors. They may have expressed themselves to family or friends, but that's not typical.

So tell me a little bit about why you thought that this article was something that you wanted to bring forward. What was the impetus behind it?

Dr. Rodrigue: The impetus behind this particular analysis was really due to a couple of different factors. In recent years, there has been a perpetuation of this idea that there is racial inequity in the opportunity to donate organs among those who are eligible for organ donation and sit with me particularly well, given my focus in disparities within organ donation and transplantation. And so in reviewing the literature, we found that really the basis of this argument that there are inequities in the opportunity to engage in organ donation was based on data that were 25, 30 years old.

And the problem with that is that was an entirely different era of organ donation, which Rick could certainly speak to. But in the late 80s, early to mid 90s, it was still the case that many hospitals really were the gatekeepers to organ donation opportunity. Still at that time was not a requirement that hospitals refer cases to organ procurement organizations.

And so it was a different era entirely. And those early studies did show differences in family approach by race. But again, in the context of what organ donation systems were like at that time, I didn't feel like it reflected accurately what was occurring in the present day.

And so that was really the basis for this particular evaluation of the data.

Mr. Hasz: I was going to add on to what Jim was saying. The regulatory context was much different when the previous research had been done, really moving from hospitals from a period in regulatory construct, where it was the hospital's responsibility to make that request for donation. And that has since been changed, late 1990s, where it's really the organ procurement organization's responsibility to make the request for donation.

And so we thought understanding that different context, it'd be important to show that we believe that OPO effect may have on that.

Dr. Rodrigue: The concern that I had along with the other authors of this paper is that the old data were being cited in prominent places as evidence of continuing disparity in opportunities to donate. For example, the older articles were being cited in the National Academies of Science, Engineering, and Medicine report about equity or inequity in organ transplantation and donation. In addition, during a Senate Finance Committee hearing, there was reference made to inequity based on that old data.

And so these were the catalysts really for pursuing a more contemporary analysis of the data.

Dr. Madden: As I said, it's very important work. And I appreciate that you have put the time and effort into getting this out into the public and to show that there really is equity here. So on that, I had a couple questions about the article.

But first, I'd like you to just do a brief overview of your results and conclusions. So the audience, if they haven't had the opportunity to read it yet, knows where we're starting at.

Dr. Rodrigue: Sure. Thank you for that opportunity. We evaluated referrals submitted by hospitals to 10 organ procurement organizations in the United States.

These 10 OPOs represent eight of the 11 organ donation regions in the country and collectively account for about a quarter of all deceased donor organs that are recovered in the United States. And so these OPOs submitted all their data on ventilated referrals that they had received from these hospitals between January 1st of 2018 through December 31 of 2022, so that five year period. And we looked at a variety of factors, including what was the focus of this paper, the race and ethnicity of each of these referrals, but also a variety of other demographic characteristics in addition to the type of donation being considered, whether it's donation due to brain death or due to circulatory death, whether or not the patient had been screened in for further evaluation by the OPO staff, what the determination of that more thorough evaluation yielded, and whether the family had been approached for the opportunity to donate if they had met criteria.

And so that was sort of a summary of the methodology. And we looked at each of these steps along the way with race and ethnicity in mind to determine whether there were any racial disparities along that path. A couple of bottom lines from our analysis.

The first is that the family approach rates across these 10 OPOs was extremely high into the mid 90% range, which is substantially higher than those prior reports or articles from the 1990s. Additionally, we found that there was no evidence of any racial or ethnic disparity in family approach rates among those who are medically suitable for donation. Of course, that was the highlight of this particular paper, that these disparities or these inequities that had been reported previously did not exist in this robust 250,000 referral sample size.

Dr. Madden: Okay, thank you for that. So just to summarize your conclusions, as you were saying, the findings indicate there's racial equity in the OPO family approach rates among patients who were deemed medically suitable for organ donation. And I can't say it again how important this information is.

We do know that organ donation is an incredibly valuable gift for the recipients, but for the donors and their families. And as said, you're approaching people probably in some of the worst moments of their life. So to talk about a little bit what was discussed in the manuscript, a lot of this is predicated on knowing what the individual who is a potential donor, what their own wishes are.

So the challenge becomes, if they don't have themselves registered as an organ donor or haven't discussed it with somebody who is willing to uphold their wishes, there's more challenges is how I interpret it, including the statement that said hospital staff might not adequately support during the process of seeing if they were eligible because their own desire to be a donor was not known. So I wanted to have a little bit of a conversation about that. Can you elaborate on that statement?

Mr. Hasz: Sure. This is Rick. Maureen, from all of the clinicians who are listening to this, I'm sure they know that organ donation is a relatively rare opportunity.

We know only about 2% of all the deaths that occur within a hospital have any potential for donation. And also known, I think, that we have an extreme amount of donor shortage really in not being able to meet the demand for those patients who are waiting, over 100,000 people waiting right now. And so as we've tried to increase donation, one of the ways that we've been doing that as organ procurement and transplant professionals is really trying to expand the donor pool.

And by doing that, we're looking at patients who maybe 5, 10, 15, 20 years ago may not have had the opportunity to donate. People who have been older age. The oldest donor in the United States has been now well into their nineties.

We know people with complex medical conditions, hypertension, diabetes, infectious disease status, no longer will rule you out. And so as the criteria for donation is changing, it's really important for clinicians to understand that and not to give up an opportunity that they might not necessarily have experience with and seen. And so when a patient has that donor designation, I think it's pretty clear.

And resources to support a patient who's in the end stage of life decision-making and having that supported is a little bit more clear versus some patients where they don't have that and are more medically complex. They may not see those same type of resources in terms of inotropic support or time on the ventilator or having other care discussions that may limit a donation opportunity.

Dr. Madden: Thank you for that. So this falls right into this again, Rick, addressing this to you. There was also a statement in the manuscript that from the OPOs, there were differences in strategies regarding eligibility criteria and therefore potentially some individuals who would be eligible, as my words, in one region may have not been deemed eligible in another.

Did I interpret that correctly?

Mr. Hasz: Yeah, I think it's really twofold there, Maureen. I think one is to make sure that we all have similar data collection tools in place, that we're all looking at the fact pattern and recording it within our own electronic medical record the same. So that, you know, making sure that we're doing that.

And then secondarily, as we've, over this period of time, there's been so many advances, mostly in organ preservation technologies that have different rates of implementation across the United States. And so things such as organ preservation technologies, both in situ and ex vivo that have emerged really rapidly over the last five years, different rates of employing those across the United States by organ procurement organizations and transplants may have you look at a donor potential differently. If you asked me two years ago, would a 70-year-old donation after cardiac death be able to recover livers and kidneys for transplant?

I probably would have said no. However, there's been now work in Philadelphia and Boston with normothermic regional preservation strategies that actually makes that a reality today that those types of donors are routinely pursued. And as these different technologies are adapted across the United States, I think we're going to see more standardization, but there's been just so much innovation in the space.

The standardization is catching up.

Dr. Madden: Okay. Thank you. I have another question.

So eight of 11 regions were represented in this study, which said approximated 25% of possible donors or actual donors. What do you think if the other three were included? Do you think it would be the same distribution in equity?

Because those other three that are not part of this study seem to be very large regions. Each of them, I'm making this up, but representing 25% of possible donors as well. So do you think that your findings would bear out if you had done the entire United States?

And then my follow-up to that is why not have included all of them?

Dr. Rodrigue: That's a great question. The first thing I would say is absolutely a limitation of this study is that the findings may not be representative of all organ procurement organizations. Having said that, in comparison to other studies that have been done on this topic, that included in one case, 3,000 patients, and in another case, about 700 patients, we had over 255,000 patients in this analysis.

So much more robust, but certainly with the caveat that it may not be representative of the entire US. Why not capture the entire US? To your second point, some of the data that we evaluated, including the primary outcome of family approach for those medically eligible, that's not a data point that is accessible to us through public databases.

And we would have to capture that data from every organ procurement organization in the country, which was not done for this study. We feel like we have a really substantial sample with these 10 OPOs.

Mr. Hasz: I was going to say, Maureen, that the United States, when you talk about the regions, that are administrative regions of the organ procurement transplant network. So the US is divided into 11 different administrative regions for policy and mostly for policy development about the national system. Within each one of those regions, there are typically multiple organ procurement organizations.

And so in the United States currently, there are 56 organ procurement organizations, each having designated hospital areas in which they're responsible for, ranging from serving 1 million population in the smallest up to over 20 million in the largest. And I think in this study, we were able to get every region, i.e. we got a pretty good across the United States representing in this study. And a number of the organ procurement organizations are really some of the larger organ procurement organizations who serve really diverse populations.

And so I think that is the strength of this particular study.

Dr. Madden: Thank you for that. I appreciate the information. It brings a little bit more clarity to some of your methodology.

So one other item that I had wanted to talk about, your manuscript demonstrated that there's been a significant increase in family approach. And I know the OPOs are always working to increase public awareness about organ donation. And I know many of them have very successful programs.

So the fact that it's now been standardized, that it's the OPO that should make the approach to the family, and there's some variability down to the individual OPOs. From either of you or both, do you think that there's a strategy that can be more effective to get people to register than capturing them at the DMV when they go and tick the box? Because that's where I think the majority of people make their wishes known and register.

Is there another method in particular conversations? Nobody ever thinks about to have this conversation with a child, even if they're 17, 18 years old. They may not have a driver's license.

Dr. Rodrigue: That's a great question. A few things that we could talk about here. And you've raised an excellent point.

The first, which you've highlighted indirectly, is that roughly about 98% of people who do register to be organ donors do so through a driver's license transaction. It is the primary portal through which the vast majority of people register to be organ donors. Also, to your earlier point, there are other strategies that are being used in some states.

For example, in certain states, you can register to be an organ donor at the time you apply for a hunting or fishing license. There are some states that allow you to register as a potential organ donor through voter registration. And so there are these other portals.

There's a national portal facilitated by Donate Life America. And there is a push within the US to continue to expand the range of opportunities that one could register as an organ donor. And then if I could add to your point about kids or teenagers in particular, for many of them, the first opportunity they have to even think about organ donation is when the question is asked at the time of their driver's permit or license.

In my research group, unrelated to this particular study that we're talking about, we evaluated a novel strategy to implement organ donation education within driver education programs. And in a randomized trial published in the American Journal of Public Health, we did show a substantial increase in organ donation registration among teens who were assigned to an active organ donation education campaign through driver education. And so I do think there are mechanisms by which we could better inform teenagers about the decision for organ registration.

Mr. Hasz: Maureen, I'll also add that particularly for your listeners who are at critical care at the bedside who may not know a patient's designated status, we find that there are really two factors that will impact whether or not a family says yes. One, was there a timely referral of the patient to the organ procurement organization so they had time to get to the hospital, to sit with the care team, to understand the potential for donation, and really to develop a communication plan with the families. For families who are undergoing this and to understand brain death, what tests were done, how that information is being communicated.

And then the second is really the time and the planned approach, making sure that the clinical team and the organ procurement organization are on the same page about the proper time to really to introduce the subject. And when those two things are done, a timely referral and a planned approach is really when we see the best authorization rates. Our study found that only 37 percent of the time did a potential donor have that designation.

So the other 63 percent of the time, we're talking to families who may not have any idea that donation was something that they thought about. And so making sure that that process within the intensive care unit goes in a standardized way, in a very disciplined fashion, really has tremendous impact eventually on that authorization rate. We know the designation is a legally binding document.

In those cases, typically move forward. But in the other cases is really when we have to dispel myths and misperceptions about donation. And so making sure that the critical care team is in lockstep with the organ procurement organization is really a key factor.

Dr. Madden: Thank you. So I do want to thank both Dr. Rodrigue and Mr. Haas for taking your time to share your knowledge and discuss this information that was published. Before we conclude, was there anything that either one of you wanted to make sure to comment on?

Mr. Hasz: I just really want to thank all the critical care providers who are listening and really without their support of organ donation, we can't create these legacies for donor families and provide the opportunity for transplant to so many patients who are waiting. So thank you for all the support.

Dr. Rodrigue: Well said, Rick. I want to echo that and also thank you for this opportunity today.

Dr. Madden: So this is concluding another episode of the Society of Critical Care Medicine podcast. If you're listening on your favorite podcast app and you liked what you heard, consider rating and leaving a review. For the Society of Critical Care Medicine podcast, Maureen Madden.

Announcer: Maureen A. Madden, DNP, RN, CPNC-AC, CCRN, FCCM, is a professor of pediatrics at Rutgers Robert Wood Johnson Medical School and a pediatric critical care nurse practitioner in the pediatric intensive care unit at Bristol Myers Squibb Children’s Hospital in New Brunswick, New Jersey.

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