As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.
Enjoy!
Speaker 1:
Last paper for today is another paper in JAMA Network Open, called Parents' Views on Autopsy, organ Donation and Research Donation After Neonatal Death.
Speaker 1:
Yeah, that was a first author is Elizabeth Crouch, and the whole paper is really great. I'm just going to go through a little bit of the background, not too much through the methods, but they're saying that this buying concerns about causing further distress for bereaved parents. Offering organ donation slash. Autopsy options can contribute to meaning making a central component of grief processing. Now, among potential benefits for families, up to 48% of neonatal autopsies show findings that were previously unknown according to clinical and geographic tests. So for many of us sometimes we feel like the autopsy is not going to add much more, but that's not what the data shows. So don't be careful when you when you say those things. Although neonatal patients are rarely able to provide donated organs due to their size, engaging the family to ask their preference surrounding organ donation can be perceived as validating the child's life, whether or not the organ are suitable for donation. Now, despite the significant potential benefits to families of autopsy organ donation and research donation, clinicians rarely receive formal training to skillfully conduct these discussions. I am terrible at these discussions. I feel like this is the most awkward thing in the world to have to go back to discuss these things with families. So I was very interested in reading this because I never feel like I'm doing this at the right time or in the right way. They talk about hurried, insensitive conversations about autopsy contribute to a family's emotional distress with insufficient training. Clinicians are appropriately concerned about retraumatizing families 100% always on my mind, and some completely avoid the topic. Yeah, that's kind of difficult for a lot of us. You kind of have to check that box so you cannot completely avoid the topic. You kind of have to march in there and ask.
Speaker 1:
So they basically conducted a steering committee to design the study. It included neonatologist, pediatric resident, three parents. It included a nurse, support group facilitator, social worker, neonatal neurologist and a counselor who specializes in pediatric and perineatal palliative care and a nurse researcher in family centered care. They basically created these focus groups and they asked a bunch of questions and all that stuff is in the supplements and you can have access to it. So I'm going to go into the results because we're short on time. But three virtual focus groups were conducted with two 90 minute sessions for each group and the final sample consisted of two groups of five parents and one group with four parents representing 14 different families. All participants identified as mothers, 75% were aged between 30 and 39 years and 66% of them were white. So from the eight main codes, they had 70 and 17 sub codes.
Speaker 1:
They had three themes that emerged from their focus group and these were number one the parents lived experiences around autopsy, organ donation and research donation in the context of neonatal loss. Theme number two was how these options can contribute to building a legacy to honor their child's life. Number three the health system recommendations for providing a supportive environment around these decisions. So let's go into a little bit each one of these themes and then we can call it a day. So in terms of lived experiences, they're saying that in the face of neonatal loss, their participants strongly supported discussing autopsy, organ donation and research donation with all affected families when feasible. They reported that these conversations can be challenging but also provided benefits in terms of the parents ability to process the loss and feel supported by the medical team.
Speaker 1:
Participant 1.4 reported, and I quote we were offered autopsy and we did do it. It was really helpful, especially because Coco's passing was such a surprise to us. The autopsy did actually help us get some good closure on what happened. It was clear to me that the doctors also wanted the autopsy. For me it felt like the doctors were really invested in wanting to know what happened because it was this total out of nowhere thing and that gave me a sense of comfort. Another participant said I remember when they came to speak with us about the arrangement, they stopped and asked if it was an okay time to talk about that and I felt like that was helpful.
Speaker 1:
So, when framed with compassion and support, these options can empower families, provide transparency about the baby's medical course. Parents of neonate who died have a few opportunities to parent that child and to make loving decisions for them. So the conversation about autopsy organization and research donation can offer a meaningful experience, a meaningful parenting experience, under appropriate conditions. Another thing that was interesting is that parents reported that negative findings could offer reassurance that there was nothing else that could have been done. So either you find something, and that helps them, or nothing, and that's also very helpful. Participant 2.4 said I know it's to each their own, but for me the more answers the better. On the other hand, not fully discussing parental options can need to regret when parents realize what was possible at a future date. The participant said but I am an organ donor. The father is alive today because he received an organ donation. I have strong feelings about it and would have wanted to do that and simply wasn't asked. So these experiences point to the critical importance of the clinician's knowledge on the educational value of autopsy and whether organ and or research donation is possible before informing the family.
Speaker 1:
These pieces will allow a thoughtful discussion on the family's wishes after death. So another theme was building a legacy. So they talk about how, even during these challenging time, parents report receiving comfort at the idea that their child contributing to society through their loss. One of the participants said I strongly believe that if the circumstances permit, every single doctor should inquire whether a patient the baby is a candidate for organ donation, because it just adds another level of meaning and layer to our children's lives that are cut short. And then they say and I quote mostly from the paper here because they said most poignantly parents reported that one of the greatest tragedies of losing a child so early in life was the missed opportunity to parent the child and to enjoy their presence. Another parent reported that it was difficult to speak about her baby in the presence of other families. They often did not know how to respond to her and this isolation brought additional sadness. Engaging in organ or research donation offered families a different way to talk about their experience and provided opportunities to remember and talk about their loved child.
Speaker 1:
The last theme is parent recommendations. They say parents who experience neonatal loss had many recommendations for standardized approach to these challenging situations. So that was very interesting. One of the key ideas centered around the relationship that support parents at this time and less than isolation. So because of the high risk and acute population, they say that a lot of time this conversation happens on like off hours nights, weekends and so they said all personnel who work in the NICU or perinatal care should receive bereavement and communication training to be able to skillfully assist the parent to make these decisions. This cannot basically like be left for the daytime person, so everybody has to be skilled at doing this.
Speaker 1:
Most participants recommended discussing autopsy, organ donation and research donation in the context of other decisions about end of life care, such as baptism or whether to have larger family visits, if that's something that your unit is considering at around those times. This approach lessens decision fatigue and allows families to think holistically about their parenting choice. In addition, they recommended written materials describing autopsy, organ donation and research donation. During times of acute stress, it can be difficult to remember details about these procedures. Written material can also be left with the families to make decisions at their own pace. I feel like a lot of us don't even know what these entail, like we're not very familiar with that, so I think this would be beneficial for us. And then in figure two, they basically give a proposed framework as to how to care for these families experiencing neonatal loss, and they have like a five step process. So it's very helpful. We'll post that on Twitter. You can take a look at it. The conclusion are that participating in autopsy, organ donation and research donation is not the right choice for every family, but informing every family of these possibilities should be a standard part of equitable care for neonatal death. If the request is made with sensitivity, some families will participate in options that give back to society or the medical system, because it is a way to honor their child's life, build their legacy, and the study highlights the necessity to partner with families to discern their goals and wishes.
Speaker 1:
So many things to take away from this paper. For us, autopsies are not free. It's a big issue. They talk about this Like some parents say well, it was free and I didn't know about it, and it's like well, if you have free autopsies, and then you should definitely offer that. For many also, organ donation is not always super straightforward. If you're lucky enough to be in a big academic center where it's easy to get the right people involved quickly and so on, that's not always an option, but I think that's also going back to what they said to try to have these discussions as early as possible. Maybe you can actually plan for that. So a very, very interesting paper wanting me to learn more. Have you been at an autopsy? Because I tried to go as a fellow.
Speaker 2:
Yeah, same thing. I don't know what happened. We were supposed to go in, I think residency, I think mine got canceled so no, I've never been, I've been, I've been. I've tried to go for a specific case, yeah.
Speaker 1:
I went to see like the results, to review the results with the pathologist, so like, but like showing us the organs, showing us the heart and stuff, but like the actual process that the kid undergoes is not something I've seen. So, yeah, I mean, I think, I think this is a an area of difficulty for me, for probably many other people and and, yeah, we. I think it highlights.
Speaker 2:
Yeah, I think. I mean, parents are always looking for answers and I think that was such an important point, like even the negative autopsies where there was no answers. At least they felt like they tried to find an answer and that and that's you know something for them. And this is about the organ donation. I mean, I actually think, I believe that lots of parents would opt if, if we had it. But you know, it's complicated because you need to certify, training to like approach parents about organ donation. So that really leaves the clinical teams out of the discussion, and there's good reason for that. However, I think, especially pediatrics and certainly neonatology, I mean, and I think there are parents who would find this exceedingly valuable. I mean their grief, and we don't and the I mean so many parents have asked me about organ donation.
Speaker 1:
I have never seen a situation in which I was able to offer that to families in a meaningful way, like actually organ donation for another human being. It's always like potentially we could send the brain to this lab that does.
Speaker 2:
So I've seen it a few times. They were able to take the like corneas and give somebody their sight, you know. I mean I think for families and that can be done after death. I think for families that would potentially be enough.
Speaker 1:
Yeah, I think, like, like you said, to find meaning you know.
Speaker 2:
So it's interesting Somebody in the community figure it out. Yeah yeah, nice option for families. Okay, buddy. Well, we are well over time.
