 Hello, and welcome to another one of our programs in our series called Caring Conversation sponsored by the Amherst Senior Center. My name is Mary Beth Ogilovitz. I'm the Director of Senior Services and have with me today Attorney Anita Saro as my guest. The topic today is about organ and tissue donation. And this specific topic in this series is really prompted by inquiries we had from residents who were really interested in starting to pay more attention to planning for end of life and also medical care planning. And part of the questions and the motivation for this program in particular is to help to empower people to take responsibility for their medical care and their end of life planning and also to support you in your own patient autonomy. So there are a series of decisions that many of us will have to make as we look at and face end of life. And as I'd like to say is that aging and dying is also living. And so how can we support you? And that really is with knowledge. So when you know the processes, when you understand what's involved in organ donation or tissue donation, that helps to empower you and also to bring some equity to those processes. So I'm really pleased to have Anita with me. Anita helped to record another conversation in this series. We did one on healthcare proxies, most orders and living wills. So if you haven't watched that, make sure that you watch that because there's some fabulous information. And this was really a topic that arose out of that conversation. As Anita and I were planning this series and looking at conversations that would be helpful to empower you. So welcome, Anita. And I hope if you could just begin by sharing your background because it is so impressive and professionally. And then sort of segue over to why this topic in particular is important. Sure, sure. Well, you know, my professional life has been something of a winding road. Those of you who had listened to our previous topics on healthcare proxy know that, you know, I've had a lifelong involvement with healthcare. I've worked as a lab technologist, a nurse. And then going into law in the healthcare field, I've always been in and around and of the healthcare system professionally. And personal experiences too, have informed a lot of the focus of my work prior to retirement and my post retirement advocacy. This topic in particular came out of a series of experiences that continue. My adult son was born with congenital defects that required a lot of surgery. And over the years, when he was 15, had some surgery that fast forward another 15 years, we discovered it was, he had that surgery at a time when there was no testing for hepatitis C. And unfortunately, apparently contracted hepatitis C at the time, which over a long period of time continued to affect his liver. So we learned as a family about living donors and about waiting and waiting for the right donor to come along. So this has really shaped my focus on how important this topic is, not just for people who might benefit directly by a donation, but believe me, it affects families as well and the people who love both the donor and the recipient side. So the topic of organ and tissue donation is a complex one. We can spend hours talking about a lot of the nuances that go into organ donation and the lesser known tissue donation. But for the purposes of this presentation, we'd like to focus on end-of-life decisions around donations. It's really, and my way of thinking is an extension of what we were talking about the last time, just as you should have a healthcare proxy to determine the right decision maker just as you can have a living will or a writing that will express your wishes for yourself. This is another part of that end-of-life decision making because this can benefit not only you and express your wishes for you, but it can extend your ability to give at the end of life. So if we can go to that first slide and then we'll get into this and see where we go. So the title is really important to me for two reasons. One, we're very familiar, I think, about the concept of organ donation, but much lesser known and much as equally as important are donating tissue and we can talk about what that means, what is tissue and how is it used. But what's really important and what is part of my mantra when I talk about these things with friends or family, we're never too old. As we go through this information, you'll see there is no age barrier for any of this and no matter how old or what condition we feel our health is in, we can always be of use. So if there's any message that you take away from this, there is not a condition, including age, that would preclude any of us from donating organs and tissues at the point of our death. So we'll go to the next one, I think. Yeah, and thank you for that framing of the conversation because I think that many people that I speak to here at the senior center believe if they reach a certain age, their organs may not be functioning as well and there's no utility to that. So that's a wonderful framework to just begin that conversation. And so pay attention because you may be able to help. Absolutely, we can all help in one way or another. So again, organ donation, this is the one we're a little bit more familiar with and obviously the need is great. It's not just great, it's overwhelming. There are right now over 120,000 people on the list nationwide, over 5,000 right here in New England. One person on average is added every 12 minutes on average die every day waiting for an organ to read that statistic over and over again and it really has to do with the lack of supply. So what do we mean when we say an organ, a solid organ? You'll hear a medical community talk about solid organ donations and that can be all of the things that I've listed. Lungs can be used for lung transplant for people who have had cystic fibrosis or chronic emphysema or the point where their lungs just simply can't, no longer working. The pancreas is interesting, it's a dual organ, it is where insulin is made and a pancreatic transplant can be life-saving for some diabetics. Kidneys are the most frequently transplanted organ and most commonly from chronic high blood pressure, from diabetes, from polycystic disease and in fact half of the kidneys that are transplanted are from living donors and I wish we could get into the details of that because it's important too but we'll leave that for another time. Intestines interestingly are considered a solid organ and they are extremely important. Some infants are born with what's called short gut syndrome or any child or adult can have a twisting of the intestines so that that piece of intestines just dies and they'll need a piece replaced. And of course, what I know the best, liver. Once when I was training for my first job in the laboratory, my mentor said, if you're ever on an examination and somebody asked you, where is something in the body made, broken down, processed, anything and you answer liver, you're 95% sure of being right. So if the liver had to be replaced by a factory, it would be huge. So it's a really critical organ, all of them are but it's a fascinating one and it will be very life saving not just for people who have had cirrhosis of the liver for, from hepatitis but also birth defects. They can transplant a portion of the liver into an infant who is born with a birth defect and that would be useful. And over 28,000 lives can be saved in a single year but many people do not get saved because of the lack of supply. I think we can go to the next one and tissue donation. You'll hear me say over and over again, this is every bit as important. It's amazing to me, the more I learn about it, the bits and pieces of us that are so not just helpful, not just life sustaining, life enhancing, but they really can sustain life. Corneas can be used to give sight. Muscles and ligaments can repair after a traumatic or a sports injury. Veins can be used. There's a very long vein in the leg, the staphonous vein that is used frequently in bypass surgery to create access graphs for people who are on dialysis. It's just phenomenal. Skin can be used in mastectomy reconstruction, burns and burned wound repair, cleft palate repair. There are so many things that they're useful. Bone is used for facial reconstruction, cancer treatment, birth defects. Over a million people every year receive this donated tissue. It's like I said, our bits and pieces can do so much good at a time when we won't need it anymore. But there are a lot of people who do need it and really keep this in mind as we go through. The last one I forgot, almost forgot, which is the most compelling. Even if they're on evaluation, a heart is not useful in and of itself, but the valves are. Those valves that are in, they control the four chambers of the heart and the flow of blood in and out. Those heart valves alone, from one heart, three children with birth defects of their heart can receive life-giving treatment. One, they can parcel out those valves and say three baby's lives from just one. So think about that. I really hope you keep this in mind that it's not just about organs, it's about the tissue too. Yeah, I have to say that tissue donation is totally brand new to me. I had never even heard of tissue donation, so I'm quite familiar with organ donation just with my driver's license, but I've heard about this. So I think that that's a really interesting take on it and really speaks to particularly older adults who might be considering their physical status, that there are many pieces that could be life-sustaining and as you say, life-enhancing. So I think that's fascinating. And can I ask the organ donation, does organ donation encompass tissue donation or is there a separate process for tissue donation? It should be on the same registry and we can certainly talk about that as, yes, definitely, but that's a good question. Just as an aside, if you've ever given blood, you have been a living donor of tissue. In fact, a mentor of mine once said, you know, you have to treat a blood transfusion as if it were a transplant because that is what it is. So if any of us who have given blood, we have been a donor, we have been a tissue donor, this is a way of extending that kind of gift at the end of our life. So next one, again, age is not a barrier. Please, please remember this, age is not a barrier. The oldest donor of a solid organ was a 93-year-old man. At the end of his life. And his liver went to a 61-year-old woman. So age is not the deciding factor. At the time of donation, decisions are based on a lot of factors. And age may be one of them, but it's part of a long series of factors. What is the condition of this patient at the time of death? What are the circumstances that surrounded that death? Even having like an infection like COVID or having a history of cancer does not automatically bar you from being an organ and or tissue donor. So there is no absolute barrier to this and no reason not to assume that just because of your age, just because of your current or possible future condition that you are going to be without use to anyone else. It's simply not true. Age is not a barrier. Physical condition is not a barrier. There are so many reasons to do this and no reason not to. And especially remembering the importance of tissue donation, even if our solid organs don't work anymore the way we want them to. But even then, 93 years old, that guy was in good enough shape that he saved a life. And probably others. Sure, I'm sure there were other things in that donation. Excuse me. So how does this happen? What's the structure that's built around this? And this is really interesting for me to learn and a couple of other steps. First, our entire country is split up into 11 regions. And they're pretty much divided by state. Within those 11 regions, there are 58 organizations called organ procurement organizations. And you'll see OPO if you look at any of the literature you'll occasionally see OPO. So those are the organ procurement organizations. They're the ones who actually do the work on the ground. New England is region one except for this little sliver of Vermont. And I have Eastern. I stand corrected. It's Western Vermont. Western Vermont, don't worry about that. My orientation on the compass was off that day. So it's sliced off and connected to New York, to another region. But for the most part, New England is region one. And within region one of these 58 OPO's, there are two that operate in New England and they work in conjunction. There's the Life Choice Donor Services and the New England Donor Bank. And again, they're the ones that do the work on the ground that we'll get into in a little bit. So those two OPO's are the functioning units. And then there's another group called Donate Life. They're all over the country. You'll see Donate Life Florida and Donate Life California. Ours is Donate Life New England. And it encompasses Massachusetts. And they're the part of this structure that provides a lot of education and encouragement, fundraising to get the word out. And I'll have a link for Donate Life New England because they have some good resources on their website. Any questions about that? Yeah, well, if someone had concerns about donating an organ or a tissue and there can be cultural issues, there might be religious issues. So there could be a number of concerns in even medical questions. Would Donate Life New England and their website be a good place of resource to try to get some more information if someone wanted to explore this topic more with their own values and culture? Definitely, definitely. They're a very active organization. I think their closest office is right over the border in Connecticut. They do a lot of outreach. They have a lot of information available. You can pick up the phone and talk to them with your questions. They are an excellent resource. That's their job. Their job is public awareness. And they do it well. So I do point people in that direction. I've used the website and the information myself. I've incorporated some of it into this presentation. So it's good one stop shopping to try to learn more, definitely. Yeah, so we can go to the next one. My screen sharing has stopped as the shared window is closed. Hold on a second. I lost, it's like I lost. And a little technical difficulty. I'll just keep talking until it comes back. I think, you know, we don't, you know, the PowerPoints are nice, but it's really the conversation that matters. Yeah. As long as my computer keeps going and doesn't freeze me up or bump me out, we'll just keep going forward. And certainly you can make the PowerPoint available at some point if anyone wants to see the slide. So what happens at this time of donation? A big concern that I hear over and over again, and it's legitimate. How is my medical care going to be affected at the end of my life? Is the fact that I am a potential donor going to change the way I'm treated? Will my death be hastened? Well, there's some fear around there and the concern is worth raising. And the answer is no, your medical care is not going to be affected. That's not the way the system works. This is not the way it's intended to work. This is steeped in the law and ethics, more importantly, the ethics of medical care. And please take this to heart. Your medical care will not be affected. Whatever wishes you have, your health care agent can express, that's going to happen. And people will respect that and encourage it. We're back. There we go. You just had to give me a little time here. Yeah. So, the first thing that happens and in the hospital setting, and a lot of this happens in a hospital setting, that there's a requirement to contact the OPO, or in our case, the New England Donor Bank, is notified where it appears that death is imminent and that this is a potential donation situation. What the OPO does at that point is to look on the registry, is this person registered and do an initial determination of suitability. Finds out a little bit more about the medical condition, a little bit more about what's going on around this patient. Then there might, there would be, and this could happen in a couple of sequences, but the next of Kent is notified. And if there's a registration already in place, they're told, you know, your loved one is here. We know that she has been registered. We would like to talk to you about what the process is. Or if it is a person who hadn't been registered, they'll contact the next of Kent, hopefully a healthcare agent, and say, this is the situation. Have you considered consenting to organ and tissue donation? That process is not a quick one. It's a thoughtful one. It's a supportive one, right from the beginning because the sensitivity around the experience of the family is really acute, and these people know what they're doing and they know how to do it. So a representative will come out to the hospital, do a further evaluation, and continue to counsel the family, whether or not they have to make this decision, even if the decision has already been made by the existence of registration. They are still counseled and counseled beautifully, I can tell you from personal experience. So then things start to happen. They match up the donor with recipients on the waiting list, and they know a lot about the recipients, and I'll tell you why, and they know a lot about the donor. And things move pretty quickly. The removal takes place. It's transferred to the recipient, usually in the same region, and the OPO staff remains with that family throughout this process until the funeral director is notified and until the remains are taken away. These people who do this work are amazing, and I can't stress enough how respectful they are and how aware they are of the emotional component for both the donor family and the recipient family, but in my mind, especially for the donor family, because it is a tremendous loss upon loss that they're feeling at that moment, particularly around those tragic situations where it's a sudden death, a traumatic death of a young person, they're just extraordinary. There's a lot we could go into on this. Some of it is medical, and I really don't feel equipped to do that, and that's why we're really just talking about that narrow portion of donation that really, to try to give you the kind of information that you need to start the thinking about whether to be an organ and tissue donation donor, and to look into it further for yourself. As I said more than once, there's so much to this topic that we unfortunately can't cover, and we could with the right people. Well, I think that this is really helpful though, Anita, because again, with regard to organ donation, I've thought about the topic, but I have never given consideration to the actual process, and also really too, as you've addressed, the complex mix of emotions that are involved in that process, because you have the passing of life, you have grief and trauma, you've referenced, and also this other opportunity of donation, and what does that mean? So it is I think probably one of the most complex mixes of emotions for the family, and I think even knowing that that process and the support of services are provided for that conversation to determine how you're experiencing that is useful in terms of contemplating it, so yeah. Good. Okay. Next slide. Yeah. Sometimes there's a curiosity about what is happening at the other end. Who are these people who are in line for organ transplants? Who are these people who are going to make use of my gift? And this is where I have to share about personal experience with my son. The screening is, I knew intellectually it was exhaustive. I saw it in a very personal way, how exhaustive it is. It's not just the physical aspects of it, the medical history, the prognosis, the severity of the individual. What happens is there is this rigorous interview process. The medical team has interviews, not just the personal, my son, but also his wife and his daughter, who was eight at the time. I was visiting one time and my son said to me, Mom, I might be helpful if I have an appointment with the social worker, another appointment with the social worker, why don't you come? And he interviewed me because what they were interested in was what is the support system that surrounds this potential recipient? He and his wife met with financial counselors, with psychologists, with nutrition experts. It was constant and it was in depth that was impressive. And while his condition worsened, there were continuous tabs on it, continued evaluation of the support system, of his ability to comply with a very difficult regimen, medical regimen. There was genetic matching and then there was the waiting and the waiting and the waiting. And as I said earlier, so many people don't get the opportunity for these gifts and he was almost one of them. It was really the night that we said, this is it. This is it, it was beginning of December and we said he's not gonna make it to Christmas. We knew it and then that gift came and it was a young person with traumatic injury. And I will forever lift up that family for what they did, not just for my son, not just for his immediate family, but everyone who loves him. Now the sad part about this, we were the lucky ones. And you can see how the supply is so tight then the selection has to be so precise. And quite frankly, a lot of the criteria favor middle class, privileged people. And I consider myself and our family in that category. We have insurance, we have the support, we don't have an outrageous amount of money, but we get by and we get by well. We don't have the enormous financial barriers, cultural barriers, barriers that race and culture play in this decision. I mean, there's so much literature and finally we're really talking about this openly. How race and people of color and culture really are created disparity within medical care generally and it really comes to light in a situation like this where there is a competition for all of these organs. It's so sad, it's a competition and some of us win and many of us don't. And the statistics will bear out how people of color and Asians, indigenous people, African-Americans or Latinx all are disadvantaged in this process. So it's frustrating, it's good that society, maybe we're just finally waking up to all the health inequities that exist and in this way too, but it's a critical piece. I think Mary Beth said it well when we were talking before. This is a critical piece of social justice that we actually can play a part in because we can not only be organ and tissue donors ourselves, but we encourage our friends and our family and our neighbors, all of our neighbors, all of our neighbors who look like us and those who don't and be able to carry this message in cultural terms that will make sense to everybody because the bigger the pool that we have, the more supports that we can give to the donor community and to those people who are afraid to be donors because they legitimately sometimes don't trust the medical system or aren't even aware about the complexities of being a recipient and how you position yourself and your family to be able to be part of this. That's a big piece of social justice and we can be part of that too. We don't have to wait for the world to catch up and be reasonable. We can fight for adequate healthcare but also universal access to healthcare. A big piece of this is financial and we can be part of that struggle. There are so many things we can do both personally, personally, either individually as being part of the stoner process, being part of the advocacy process, being part of the political process, it's all of a piece and this is an important part of it. Very definitely you might have some thoughts on that too. Yeah, so I really appreciate you tying that together because in our conversations we had spoken about that that education is a great equalizer and so part of the intention of these presentations is to make sure that everybody is informed first of their ability to be able to donate if it's consistent with their values and their beliefs and then also that people are aware of the process and the system to become a recipient and how they could access that information because I've always found in my life that information is power and when you brought to light to me about the inequities with regard to the distribution to recipients and the racial inequities, this is just another small drop in that bucket of making sure that people know there is a resource, here's a piece of the information, we can support you in accessing that information and then we can begin to build upon that because it is exhausting, I'm sure if you are a family who is in need of a donation, that process I imagine is just as emotionally straining and if there's a way that we can support people in that process, that's what we wanna be able to do. Definitely. The angle of increasing supply as an equalizer makes all of the sense in the world and so again, we just hope that people will take this information and then begin to have that conversation within their whole family system so what really came to light, I just wanted to highlight is when you were talking about the instances in which a younger person perhaps passes and that that becomes an opportunity to donate and though this conversation is starting at the Amherst Senior Center, what really struck me is it's a great opportunity when you're sitting around the house having a family dinner socially distanced or gathering your family or doing your Zoom meetings is to have a whole conversation with everybody so I have to tell you, I have four children in their 20s and I intend to go home tonight and speak to all four of them and ask them, are you registered as an organ donor? Is there any conversation we need to have around that so that it's not just looking at it through the lens of an older adult becoming a donor but also that younger individuals and whole family systems should be having this conversation and inviting. So I appreciate the many sort of sub themes here. Thanks. Yeah. And finally the next slide is how you do it. We've been telling you all the why's and this is how you do it. If you have a driver's license, that is part of it and it does talk about organ donation but to the best of my knowledge it is that organ and tissue and that certainly is something that when the time comes for the donation that OPO group would go into with the family in some detail. That online registration is available through Donate New England, that's the website. It has a link for registration. You can do both even if you have a designated on your driver's license. You can also ensure that you've been registered by doing it through Donate New England. As Mary Beth said, the senior center is available to help with that process. Once you're registered, no one, not even your healthcare agent, nobody can override your decision. You're locked in. Only you can change your mind but if you do, make sure to change your registration and if you registered in two places, make sure that they're consistent. Make sure you make that change but I hope you don't. I sincerely hope you don't register. And then the other part, when we talked about healthcare proxies and living wells the last time, both Mary Beth and I stressed, excuse me, the importance of not just doing the paper but talking to people, talking to your healthcare agent, your caregivers, your loved ones, making sure that they know it. And if you are developing a writing or if you have a writing that lays out in some detail, your wishes include the fact that remember I'm registered or remember even if I forget to register officially, this is what I want. And make sure they have it well before those documents are needed. So I think you can tell that I feel pretty strongly about this topic and I'm hoping that you learn more about it and you become just as passionate and committed to it as I can and as I am. So Mary Beth, do you have any words to wrap us up? Well, I just had one question about the registry through Donate New England. So some of our residents may not have a driver's license, it might be a status that's prevented. Absolutely. Or older adults sometimes no longer have a license because they're just not driving any longer. So if somebody didn't have that license option, would the registry donate New England to be just as legitimate and valid in terms of registry? Absolutely, absolutely. I mean, remember this is they're affiliated with local Oregon Procurement. They facilitate getting you on that registry. Excuse me. But the Donate New England is that public awareness, is that link between us and the whole donation administration? So that's a really good place. I've done both, you know, I'm a belt and suspenders kind of person. So I've done both. Okay. Well, you've given us a lot of information and also a lot of follow-up and to-do. So I know that for myself, I'm gonna go home and I'm gonna speak to my entire family system. Yes. My young folks and my older folks and asking about this and really lifting the conversation and expanding it beyond an organ to tissue donation. I think that's so very interesting. And again, was all new information for me. I hope that people listening and watching this today find that this is really helpful. It certainly, one, it would spur a conversation and some thought around what would be appropriate for you in your own situation. If you wanna get more information, you can certainly go to the website that's listed here, Donate Life New England. If you need assistance, if you are someone who does not have access to the internet and you would like us to print out information, just call the senior center at 259-3060 and we could print out for you information. We can mail it to you. If you come here, we could hand it to you. So we will serve as a conduit for any of the information if you wanna explore this topic more. If you need assistance to navigate the site, so sometimes we have individuals who go on the site, but they're not sure how to work it. We can speak with you and help you to navigate it. We could help you to register if that's something that you choose to do as a result of this. And most importantly, I hope that you leave here with a lot of knowledge because information is power and what we seek to do with the Amherst Senior Center is to empower older adults to have full autonomy over the entire span of their lives. And that means even the end of their lives. And I think that one of the most amazing things about you, Anita, and the presentations that you've assisted me with is that you have a wonderful way to bring together both your personal stories of the ways in which these issues have touched to yourself. You have a medical background and you also have had that legal background in terms of working within the healthcare systems. And I think that many of the ways that you've shared stories have helped to sort of destigmatize and invite people into the conversation in a gentle way. I think I know that my own process when both of my parents were passing and I was helping them through that process, it really brought to life. My own personal resistance to having these conversations because I wanted to hold on to life and I didn't wanna admit to what was happening. So I think there's tremendous value in the conversations that you've shared with us to start the conversation within your own family systems. In whatever way you can begin this topic, I think it's incredibly important to acknowledge that we will all face this point in our lives and that there's real courage, there's benefit. It gives a person autonomy. It gives their family a gift to have that conversation, to proceed a decision being made at a crisis point. So I thank you from the bottom of our lives. It's been a pleasure. And we're senior center. So it's been really wonderful. And please anybody if you need any information on any of the topics in these series, contact us at the senior center 259-3060. And if there's information, we can pass it along. And I can also check in with Anita about questions. I'm sure she continued to serve us. And anything you wanna finish up, a final thought or? No, it's just been, it's been a gift for me to have the opportunity to spread the word like this. I really appreciate having been able to work on these two topics. And as far as coming up with more resources, I know there are others that I didn't include on the slide that I could, we can compile a short list, printed materials and what the resources are out there. But certainly the best place to start is with Donate, New England. And we all have stories. I think what you're pointing out, we all have stories. And our stories help each other to be able to make some sense out of some really difficult topics. And we should keep talking. Yes, yes, that's certainly where I come from is having open space, air, transparency and having the conversation on comfortable conversations. I think the town's gonna be engaged on many levels. And here's another piece that we can, of being transparent and explicit about these topics. So thank you. So if anyone's wondering how Anita got to this point, she walked into the senior center one day. I was familiar with her name and her reputation within working in Hamden County. And I just said to her, are you the Anita Sara? And I said, I would really like to talk to you about some of your background. So if you have a background that you'd like to share, give us a call as well. And thank you for being so open and receptive, Anita. And thank you for all of you. Yes, thank you.