Sep 20, 2022
On this episode, our guests discuss how postmortem tissue donation can provide meaning to patients and their loved ones.
Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours. This is when we get in-depth on articles that are published in the Journal of Clinical Oncology. I am your host, Shannon Westin, GYN Oncologist and Social Media Editor of the JCO.
Excited to be here today to discuss a really awesome paper. It was a Comments and Controversies named “Postmortem Tissue Donation: Giving Families the Ability to Choose,” just published on August 26th, 2022.
And I'm joined by a number of the authors. It's going to be a really incredible discussion. I'd like to introduce each of them, and then we'll get right down to it.
First is Allen Gustafson. He is the founder of the Swifty Foundation, which he started with his son, Michael, who sadly died in 2013 of medulloblastoma. And this foundation really was the catalyst of the group Gift from a Child, which we're going to really discuss today.
In addition, I'm accompanied by Dr. Angela Waanders, the Interim Head of Neuro-Oncology and the Director of Precision Medicine and Associate Professor at the Ann & Robert H. Lurie Children's Hospital of Chicago; Beth Frenkel, a Tissue Navigator at the Children's Hospital of Philadelphia; and Dr. Mateusz Koptyra, a Senior Scientist and the Director of the Center for Data-Driven Discovery in Biomedicine at the Children's Hospital of Philadelphia.
So, thank you all for being here. I'm so excited to discuss this paper. I think this is something that our listeners are going to be really interested in and really want to move forward. So, welcome.
Allen Gustafson: Thank you.
Dr. Mateusz Koptyra: Good morning.
Dr. Shannon Westin: So, let's get started. You know, postmortem tissue donation is so critical for research and improving outcomes for our survivors. I think the best way to start, I'd be very interested to hear how each of you got involved with this.
And Allen, let's start with you because I think that your story is so important.
Allen Gustafson: Sure. Thanks, Shannon. Well, as you mentioned, our son, Michael, died of medulloblastoma in 2013 at the age of 15, and probably about four months before he died, he knew his life was going to end. And he got the idea of donating his body to science, so they could use him to find the cure. And he used to refer to that as his master plan. So, obviously, that charge was put on his mom and I to figure out how he could do that. And although we were being treated by two excellent hospitals, one here in Chicago and one in Boston, they were not helpful in terms of helping us with his final wish.
And so, it was really through Nancy Goodman from Kids vs Cancer and his pediatrician going above and beyond the call of duty that Michael was finally able to donate his spine and his brain, some of which was sent to Texas Children's and some of it was sent to SickKids. And it became both very meaningful for him as his life ended, and it was also very meaningful for us in terms of the important step we took as a family in our grieving and our loss of him. And as you mentioned, our work with the Swifty Foundation, really, his choice there was prescient, in that we didn't realize how important postmortem collection is for advancing scientific discovery, nor did we realize how important this could be for other families. So, it all started with his experience in terms of our journey with Gift from a Child.
Dr. Shannon Westin: That's so incredible. I'm so glad that you chose to do this work. Dr. Waanders, do you want to pipe in?
Dr. Angela Waanders: Yes. So, I think reflecting back, it really was a serendipitous moment in meeting with Patti and Al. I can still remember it was in 2016, I believe, at a Children's Brain Tumor Network annual meeting. I'm a Physician Scientist, a practicing Neuro-Oncologist, and at the time, I was in the laboratory trying to dissect out, why do children die from brain tumors. I was also taking care of children who were losing their battle. And so, a couple of years prior, I had been trying to figure out how to set up a postmortem or a research-based autopsy program.
I knew from talking to some of my own families and helping to make it happen, it was really important and meaningful to them. But the logistics were beyond me as a single provider. You know, it really takes a lot of logistics going from the initial conversation, to how to make it happen. And so, one of my colleagues, Dr. Rishi Lulla, introduced me to Patti and Al. We realized we had a shared mission.
And so, I've been very fortunate and grateful to be involved in this project. And, you know, including some of the comments from the paper, as well as meeting and talking with families, and seeing even the larger scope, families do want us to ask. This is meaningful for many families. And it's a really special moment for me as a provider in any of the autopsies that I help to coordinate with our Tissue Navigator, Melissa Williams, at our hospital, we do try to have a follow-up conversation with families when they are ready, and those conversations are just so meaningful. I have several stories of things that I hadn't even imagined would be meaningful to families.
And so, to me, this has really been something that wearing both hats as both a physician, and a scientist, that is one of my projects, and things that I've been involved with that I think will have the biggest impact when I look back at the end of my career.
Dr. Shannon Westin: I completely agree with you. Dr. Koptyra, I'd be interested to hear your perspective of how you got involved with this.
Dr. Mateusz Koptyra: Hello. So, working as a scientist at Children's Hospital of Philadelphia, I actually had the privilege of also working with Dr. Angela Waanders here at CHOP. And part of my scientific effort was really focused on utilizing biospecimens into research. And specifically in the lab, we are generating two more models which can be used in wet bench research that specifically relates to cell lines or xenograft models used in science to explore tumor biology, novel therapeutics, et cetera. And at that point, Angela actually introduced me to the Gift from a Child program. And initially, I offered my assistance, but quickly realized how working with the Gift from a Child program and with Swifty Foundation, adds additional meaning to our daily work in the laboratory. So, from initial assistance, I quickly became fully engaged in the process of tissue banking, processing, and model generation out of specimens we received on their website. Until today, I'm leading that effort on the laboratory side here at CHOP.
Dr. Shannon Westin: Thank you. And then Beth, I think we'd be interested to hear your perspective as well.
Beth Frenkel: So, thank you very much for having me. I started my career as a funeral director. I did that for about 10 years or so before moving into organ and tissue transplant. My job, specifically, was advocating with our community and our healthcare partners to make sure that every family was given the opportunity to donate, to help others. What really got me into my job here with Gift from a Child is that my mom was diagnosed with an inoperable brain tumor, and there were no treatment options for her at all. And so, after her death, it really led me to start researching brain tumors and to see the lack of treatments, not only for some adults, but for all of these kids. So, that's what really made me seek out this opportunity with Gift from a Child, and to work with all of these wonderful people to try to help these kids find better treatments and cures.
Dr. Shannon Westin: You all have such incredible stories, and it's so inspiring to see people take terrible things that have happened to you and make it into something so much more positive. So, I'm so inspired by all of you.
I know personally as a surgeon and a physician, I sometimes feel really uncomfortable approaching the idea of postmortem tissue collection with patients. So, I think one important aspect of it is—you know, of course, we've talked a little bit about the positive impact on research, but can you all speak a little bit more about how family members actually may benefit from this practice in being offered this opportunity?
Allen Gustafson: I'd be happy to start. I think I can speak both from a personal experience, as well as from the many families we've spoken to and surveyed. I think the number one reason families want to make this choice is to help other families. I mean, it's the one bit of light that can come from perhaps the darkest time a family is ever going to go through. I know that's what prompted our son, Michael, in his words, to help as many as he can. And as we talk to other families, that is their principal reason for giving, as well as certainly to create a legacy for their child. As I mentioned, our son was older, so it also gave him some personal meaning at the end of his life. And helpful in the grieving process, both to know that your loss may be benefiting another, but also the researchers that have received Michael's tissue have been keeping up with us in terms of publications that his tissue has helped fuel. And there was even a protocol change in how recurrent medullo is dealt with that Michael's tissue was a part of. So, again, to know that is so gratifying for the family.
Dr. Shannon Westin: I think that just knowing that and hearing that from personal experience should, hopefully, help our practitioners that are listening feel more comfortable with approaching it. The consensus conference that you all discussed in the paper, how did this come to be? What drove that discussion and where people ended up? Angela, if you want to tackle that?
Dr. Angela Waanders: I can take this question. So, the consensus meeting in 2018 happened in Philadelphia when I was still at Children's Hospital of Philadelphia. It came out of a conversation with Patti and Al. We really wanted to dive down deep into understanding what barriers existed. I knew from the clinician side, it's uncomfortable. It is a really difficult question to broach, and so, we thought that from hearing from families-- and we specifically chose a mix of families that were able to donate and those who were not able, or who hadn't been asked, and it's a meeting that will forever stick in my head, just the moments and things that I would not have imagined.
And I think for all of us who were involved, the families that did not have the option to donate, or who weren't asked, I think the quotes and the comments from those families were the most memorable. To kind of step back a little bit in how I became involved in this too, it's trying to make sense of the nonsensical. I mean, children should not die from brain cancer, and children should not die from brain and spinal cord tumors. We are uncovering the biology, the past decade has been really exciting from a biology standpoint, but having matched specimens from the time of diagnosis to time of death, will really answer crucial questions, which are, why do children die?
And so, as clinicians, we just kind of need to get out of our own way, get out of the discomfort of asking, and, I think this is something that our generation of physicians are modeling. Another big aspect of this too, and I think this came out of the consensus meeting in 2018 and is important to continue to illustrate and emphasize; tissue that's taken, you know, this precious tissue, this precious gift, the mandate is to share it broadly. So, we did develop standard operating procedures so that we can try and make cell lines, we can have matched tissue for DNA and RNA extraction, protein extraction, we can look at areas of tumor, areas that don't look like tumor. And with the understanding, this tissue will be shared as broadly to every laboratory who is studying brain cancer or something relevant, and that the findings from this precious tissue will also be redeposited or shared again. So, this really is a legacy of life and celebrating the life of these children who've lost their battle.
Allen Gustafson: If I can add one thing on the consensus meeting that the other great thing that came from that, we wanted to query families about how clinicians should talk to them, or what's the best way to talk about this very sensitive subject? And we were right at the beginning of our Gift from a Child, creating the program. And so, our website and our materials have all been influenced by the input of these families. And so, we created these to help clinicians with this very difficult conversation. And that consensus meeting really helped us understand as best we can understand any individual family, how to communicate this very, very sensitive subject at such a very difficult time in their family's journey.
Dr. Mateusz Koptyra: If I can add something as well, I actually had this privilege during, and after that conference to provide a tour for some of these families around the laboratory, and kind of refers to us into your former question a bit, but I was able to show the biorepository where the tissue is stored as well as laboratory and some cell lines and models, which we created in the laboratory. And one thing which was really striking and filling, and in words which were shared by those families, the fact that some of donated tissue, some of these families actually already donated tissue, that some of those tissues are within this biorepository, that some of the cell lines we have might be specifically from the tissue from their children, brought this almost like continuity of their life and the second meaning to family's life, just by possibility of being together in this laboratory and seeing that those models work. Talking about investigators who actually share those specimens had exactly the same effect, bringing this kind of closure to the fact that this tissue still brings meaning on a daily basis.
Dr. Shannon Westin: It's wonderful. You know, Allen, I wanted to kind of expand a little bit on something that you started talking about around “best practices for requesting” because I really do think that's a huge-- one of the huge barriers is that we feel uncomfortable as clinicians in asking. And so, I'd be interested to hear a little bit more about what are the best ways to approach this, and to give these families this opportunity.
Allen Gustafson: Well, I can certainly give the parent point of view on this. First, I would say that our Oncologist and the healthcare team helped us make difficult decisions throughout Michael's cancer treatment and had a lot of very difficult conversations with us. And so as a family, we would see this perhaps as another difficult conversation to have in the journey of our son's cancer. And again, I would encourage physicians to think about it like that, because they are quite practiced in having difficult conversations with family members.
I think the best time that obviously, this conversation would be received by a family is when it becomes clear that our child is not going to survive their cancer, or perhaps when they enter into hospice. Again, it's such a difficult time for us. And it may be the case that we don't respond particularly well to what the clinician has to offer. And I know, you know, throughout Michael's cancer journey, I wasn't always at my finest hour with my Oncologist in terms of my response to what he had to tell me. So, that certainly may be true here as well, but again, I think the more important thing here is that it's really the family's choice to decide. And like other choices that are made throughout our child's cancer journey, we deserve to make an informed consent about that. And so, this is another opportunity, I think, for those of us whose children don't survive their cancer, to make another important informed consent.
Dr. Shannon Westin: Thank you. Angela, you've done this so much. I would love to hear your perspective from the other side.
Dr. Angela Waanders: So, with asking, it's a big thing of, this is a cultural change too. On an individual level, when I'm talking with one of my own families that I'm guiding through a cancer journey, I usually bring it up at the time when we're talking about, "Your child's cancer may still be treatable, but it's not going to be curable." And so, opening up the conversation to what is important to you, what is meaningful to you as a family, knowing that the cancer will ultimately take your child's life. And so, during that part of the conversation, I usually bring it up as an option and say, “You know, one thing that I have found that some families find very meaningful when they know that their child is dying from cancer, is to donate, and we do have a research-based autopsy effort.” I go into just a very brief description of it, and I read the room.
Some families you can tell, like they are too shocked, too overwhelmed, to even broach that conversation. And so, I say, "You know, we can talk about this at a later time." Or if it seems like it may be a hard “no,” initially, just not interested at all, or just it's not a topic that they want to broach at that time, I do say, "You know, let's keep the conversation open, and I may bring this up again later, or please feel free to bring it up to me again later."
One of the key messages we try to convey is to try and do things beforehand, if at all possible, and also explain the process once a family expresses interest. Because it is foreign, it is unknown. As Beth was bringing up earlier, you know, with her prior experiences with Gift of Life, there was a time in the US when organ donation was unfathomable. And now I think for many of us, it is just a commonplace, it is something we automatically state.
So, it would be very nice for us to have that cultural change within our field, within Oncology, within Medicine in general. An important part though is, when I ask, I know I can make it happen. And I think too, for many physicians, many clinicians, and this is where the Gift from a Child program has been so important and really a game-changer in making this happen, is I know when I ask, and I bring up the conversation, that I can make it happen. And that is one thing we truly try and convey to any clinician who expresses interest. We talk with them, “Here's the process, this is what you need to do, and this is how we can make it happen."
So, I think from both getting out of my own way of the discomfort of asking the question, modeling the behaviors with our trainees, I do oftentimes have our fellows, or our residents in those meetings when I'm having these difficult conversations. And then also just conveying and making sure that logistically we know we can help make this happen.
Dr. Shannon Westin: Great. Beth, I don't know if you have any thoughts kind of from the Navigator perspective. I'd love to hear.
Beth Frenkel: Yeah, sure. I definitely agree with Angela that I think when we're dealing with clinicians, one of their biggest concerns is that it's going to be a lot of work for them. And that's when the role of the Tissue Navigator takes over, is that we don't need a lot of involvement from the family clinician, they aren't as involved as they would like to be, but that's our job, is to coordinate all the logistics. We work with the families, we work on getting consents, we take care of any kind of processing of the tissue, shipping. So really, what we're looking for from the clinician is the referral. We're just looking for them to bring up that topic with the family and give them the opportunity to make an informed decision about if they would like to donate their child's tissue.
Dr. Shannon Westin: Great. And then Allen, you mentioned something and I was interested in this overall, you know, you said that the researcher kind of was keeping you in the loop and letting you know what the tissue was utilized for. Is that pretty standard as far as accountability, or what measures are in place to kind of keep families in the loop?
Allen Gustafson: When we started this, one of the values here for us was that the researchers who would receive our children's tissue would be excellent stewards of that tissue. And one way, in our mind, to ensure that excellent stewardship is transparency. And so, as a family member, we can stay abreast-- and again, this is not for every family member, but most family members do choose to want to know what's happening with their child's tissue, in terms of how it's being used in the lab, how it perhaps is fueling a study or a publication, and God willing, perhaps improving treatments for future children. So, that is really an important aspect of this whole process.
Dr. Shannon Westin: Great.
Dr. Angela Waanders: And Shannon, we have families, from my experience, that they kind of make it a yearly thing. Like, on the child's birthday, they'll reach out and ask, "Hey, is there any update on how my child's tissue is being used?" Or maybe they were just thinking about it one day, and they'll send an email and ask, "Hey, can you give me any updates?" So, the donation isn't finished after the actual autopsy is complete, we develop a relationship with these families that lasts forever. And they can feel comfortable to reach out at any time with any questions, or if they want an update. And I think that's also a way that the Gift from a Child program is so different from any other postmortem donation program.
Dr. Shannon Westin: It really is so inspiring, and it makes me want to figure out how to do this and within our own field. I think the time is flown by, and I'm so grateful to all of you. I think the last piece would be just to make sure that everyone listening, where can families learn more about the process, and what's the best way for also clinicians to check in on what you all are doing?
Allen Gustafson: Probably the easiest way to do that is through the website, which is: giftfromachild.org. There, you'll be able to find all the information you need, to get in touch with the Navigator. Families have access to a 24-hour hotline that they can call at any time. And their call will be answered within 24 hours, and that hotline works for clinicians as well. So, that would be the best place to start, I think.
Dr. Shannon Westin: Well, thank you. Thank you all so much for all of your work and this amazing paper. And I hope everyone does go and check it out again. Again, we were discussing; 'Postmortem Tissue Donation: Giving Families the Ability to Choose', published this month, August 2022 in the Journal of Clinical Oncology.
Thank you all for tuning in, and please make sure you like and subscribe. And we'll see you next time.
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