 Josh Barrow is a hospitalist and palliative care physician at Cook County Hospital. He's a clinician educated with research interests in medical education and ethics at the end of life and Josh will be speaking on organ donation among undocumented Hispanic immigrants assessment of knowledge and attitudes. So I'm standing between all of you in the party. Is that where we're at? Great. It's a good spot to be. So I'm Josh Barrow. I'm excited to be back at U of C. I did my residency here and I went on to do the McLean Fellowship. Thank you for inviting me Mark. So I've been at Cook County since finishing my residency and today I'm going to be discussing a study that we performed at our hospital. I want to give a special thank you to Dan Bronner for advice and insight. Brian Lucas for methods support and Carmen Martinez who is the saintly nurse who interviewed all these patients on her own time. So I have no financial conflicts of interest. I do have organs and may at some point desperately need one in the future so that that may be a conflict we'll see. So my interest in this issue actually it started with a case. Maria this is not actually her but she was a 33 year old undocumented Mexican woman who was admitted to our hospital with shortness of breath. She was diagnosed with acute myocarditis and she rapidly deteriorated to the point where she was requiring maximum life support to survive. Her family was told that the only option to save her life was a heart transplant and she was evaluated. However she was deemed not to be a candidate because she was quote unquote undocumented. She was ultimately actually declared brain dead so she was approached by representatives from our organ procurement organization which is the gift of hope in Chicago. When the hospital interpreter translated the representative's request her family turned to the interpreter and looking at that person said how could you ask us for this? You know that she couldn't get one. And this issue has actually been getting pressed recently. This summer in fact undocumented immigrants and advocates protested outside of major medical centers in Chicago and as you can see from the signs and from the headlines they were protesting the fact that undocumented immigrants cannot receive organ donations. Now I want to take a couple steps back and just explain what we're seeing right. So I mean excluding patients from organ transplantation because of their immigration status seems doesn't seem right. And in fact the organ procurement transplant network has a policy that directly addresses this issue and it clearly states that a person's citizenship or residency shall not affect allocation of organs. But you know the reality isn't so clear. The majority of undocumented immigrants are effectively barred from receiving solid organ transplants because of restrictive reimbursement criteria. Right so upwards of 60% of undocumented immigrants in the US work in low-income fields that don't provide private health insurance. At the same time federal law expressly excludes them from any federally funded program. Medicare, Medicaid, this also applies to the Ford Will Care Act. So as a result this group is effectively uninsurable. And as this group is uninsurable to receive a transplant they would need to cover the costs of the procedure and follow-up care independently. Of course solid organ transplantation is expensive and as a result organ transplantation in this group is exceedingly rare. How relevant is this question? Well based on current estimates by the Pew Hispanic Research Center it affects approximately 7.2 million people. Okay so this explains why our patient couldn't receive a heart transplant and now I want you to focus on the second piece of the story. Right because though they aren't eligible to receive organs these uninsurable undocumented people can donate organs and in fact CMS and JCO regulations require that we ask them or at least I should say ask their families for their organs. Right the so-called required request rule. I find that difficult to say. Okay right so what this means is that people are being asked to donate their organs into a pool from which they are expressly excluded. Right and this challenge is a fundamental principle of the organ transplant system fairness. Right so that's the background. That's how I got to these questions. Right I mean do undocumented immigrants know about this? How do they feel about it? Would knowing this change their opinion about donating their organs? And I mean should we be explaining this to people before asking them to donate their organs? So to determine the answers to these questions we performed a study. We used a convenient sample of patients admitted to the general medicine service and we interviewed them on their first hospital day. We enrolled 59 patients. We approached about 133. So we included all patients who were over 18 years old who spoke either English or Spanish and who self-identified as undocumented immigrants or legal residents who had their green cards for less than five years. And just to be clear in Illinois legal residents who have had their green cards for more than five years are in fact eligible for Medicaid. So we excluded patients who self-reported having diseases that would preclude them from being organ donors. Namely cancers, HIV, chronic viral hepatitis and the reasoning being that if you knew that you couldn't really donate an organ anyway your thoughts about donating your organs or at least your responses to our questions might be different. So our participants were predominantly Mexican. All but one were Spanish speaking. 93% were uninsured. They had low educational achievement so 87% had high school education or less. They had strong support systems so 87% had family in the US and 87% had children and interestingly 63% had family members that were US citizens which might suggest some degree of acculturation within US society. Okay so what did we do? All right so the interview consisted of 32 questions, took about 10 minutes to complete and it was performed at the bedside in a face-to-face fashion. There were three parts to the interview. There was an assessment of knowledge, attitudes and beliefs about organ donation. We then performed an intervention and then finally we collected various demographic information. So the intervention, this is what I want to focus on for the remainder of the talk. Here's what we did. So we asked people if they had health insurance. We then told each participant that people without health insurance can only get an organ transplant if they pay for it themselves. We asked them if they knew this. We then asked them to guess in dollars the cost of heart transplant, liver transplant and a kidney transplant. We then gave them the actual costs of the procedure and then reassessed whether they would be willing to donate their organs when they died. Of note we had asked the same question about willingness to donate earlier in the interview at the very beginning. So we were able to document whether there was a change or not. So regarding the cost estimates, so most of our participants, 68% knew that they would have to pay for an organ themselves. But they dramatically underestimated the cost of the organ transplantation. I mean look at the median estimated costs by our participants and then compare those to the actual costs. I mean they're off by hundreds of thousands of dollars. Even people in the 75th percentile aren't really close. And just so you're aware these costs were they incorporate 30 days of kind of pretransplant workup, the procedure and attendant hospitalization and then 100 days of, excuse me, 180 days of post transplant outpatient care and medication. And then inside the box we see people that changed their minds. So you'll see that 43 people that far right column stated that they would be willing to donate their organs before the intervention. Three changed their minds after the intervention. 16 people who had stated that they would not be willing to donate their organs before the intervention actually changed their minds after the intervention so they would donate their organs. So I mean you probably don't need statistical tests to tell you this but we perform the McNamara's test which assesses for a change within a group after an intervention and the P value at the bottom of the slide there is 0.48. Clearly not significant. So now to be frank our study has limitations right. The sample size is small. The possibility of social desirability bias is clearly present. The reported willingness as previous speakers have said does not correlate well with behaviors but you know we believe that it really that is provocative. I mean the present situation in which a group of people can donate resources to a pool but do not have access to the benefits of that community communal pool is inherently unfair. Now that said the solution to this is a political one right and one piece of this puzzle has been addressed in a fashion and let's see how that plays out. I hope you know but through health care reform and we can be hopeful if not optimistic that the second piece may be addressed in the near future with discussions around immigration reform okay but our study raises a corollary issue in this situation which is access to information right and there are real significant barriers to organ transplantation with this within this community and the participants in our study lacked key information about these barriers. I mean it's information that is relevant and it's information that they want and this is a problem with a much more straightforward solution. A solution that I believe is within our purview as clinicians and advocates. Much of the discussion around organ donation centers appropriately around scarcity and increasing access. However you know a robust organ donation program requires that in pursuit of our goals of saving and improving lives we demonstrate respect for persons as Dr. Sanders I think is exploring. Respect for persons requires fairness and it requires informed consent and our study suggests that for the undocumented immigrant community these foundational principles are not being met. Thanks. I found Dr. Sanders' discussion or in use of you know the word coercion I found that interesting. It's something you know the number that is where you have you feel like you it's such a you know such a great deal that you need to do it. I'm not a hundred percent sure I don't know I find that interesting but I and I this question of asking an undocumented immigrant for their say for their kidney would they feel coerced part of that depends on how the question is asked right so I and what type of information the person is given how the question is asked so sometimes you'll hear these concepts of going three deep asking three different ways the question three different ways. I don't know that for that you know the case that I spoke about asking that family three different ways whether they really didn't want to donate the organ to me seems putative it seems there's something wrong there right and so I don't know that is coercion but it's certainly I don't think it's appropriate would be kind of the the weakest word I would use. Please please join me in thanking Josh and and all the speakers for this session.