The truth about perinatal hospice care

Donald Trump claimed that newborns are sometimes “executed." That is not true. He’s talking about perinatal palliative care. We learn the facts about the care these grieving families receive and why it's sometimes needed.

Tammy Ruiz Ziegler, retired nurse and bioethics consultant who worked extensively in perinatal loss and palliative care for 19 years.

Dr. Sara Peeples, associate professor of pediatrics and neonatology at the University of Arkansas for Medical Sciences. She also works at the Children's Hospital in Arkansas and is trained in perinatal hospice and palliative medicine.

Cathleen Warner, a mother who has gone through perinatal palliative care with her daughter Erin.

Part I

MEGHNA CHAKRABARTI: On June 27th, while debating President Joe Biden, Donald Trump made this claim about abortion.

DONALD TRUMP: They will take the life of a child in the 8th month, the 9th month, and even after birth. After birth, if you look at the former governor of Virginia, he was willing to do this. He said, we'll put the baby aside and we'll determine what we do with the baby, meaning we'll kill the baby.

CHAKRABARTI: On September 10th, debating Vice President Kamala Harris, Trump's description grew more cruel, more extreme, more erroneous.

TRUMP: You can look at the governor of West Virginia, the previous governor of West Virginia, not the current governor who's doing an excellent job, but the governor before. He said, the baby will be born and we will decide what to do with the baby.

In other words, we'll execute the baby.

CHAKRABARTI: Trump seemed to immediately recognize the power of that word. So he repeated it.

TRUMP: Execution after birth. It's execution, no longer abortion, because the baby is born, is okay. And that's not okay with me.

CHAKRABARTI: Political language is easy to understand, and impossible to forget.

It's powerful because it overwhelms by oversimplifying, sweeping away any room for context, nuance, and truth. For example, Trump had one thing right in June, but got it wrong in September. It wasn't the governor of West Virginia, but the former governor of Virginia, who once commented on a proposed abortion bill that would have expanded access to abortion into the second and third trimesters.

Former Governor Ralph Northam is a Virginia Democrat and also a pediatric neurologist. In 2019, he was asked about the bill specifically about acknowledgement from the bill sponsor that it would allow abortions up until just before birth. Here's exactly how Northam replied in an interview with the Washington DC radio station, WTOP.

NORTHAM: And it's done in cases where there may be severe deformities, there may be a fetus that's non viable. So in this particular example, if a mother is in labor, I can tell you exactly what would happen. The infant would be delivered, the infant would be kept comfortable, the infant would be resuscitated, if that's what the mother and the family desired. And then a discussion would ensue between the physicians and the mother.

CHAKRABARTI: Trump is not the first Republican to attack Northam's comments. Right after that interview, former Republican National Committee Chairwoman Ronna McDaniel said on Twitter that, quote, Northam was defending born alive abortions. Florida Senator Marco Rubio tweeted that Northam was supporting, quote, legal infanticide.

But what Northam was trying to describe in 2019 is a medical practice properly known as perinatal palliative care. It is not an execution. Today, we will explore the truth about perinatal palliative care, what it really is, why it's needed, and what care an infant and a grieving family receive in the most heartbreaking moment of their lives.

CATHLEEN WARNER: The doctor called me on Saturday, and I just remember crumbling to the floor. I just couldn't, I didn't even know, I just couldn't. Couldn't even fathom it.

CHAKRABARTI: Cathleen Warner also lives in Virginia. In 2007, she was expecting her third child. Cathleen and her husband already had two boys. This time, they were expecting a little girl. This was a little more than a decade before Governor Ralph Northam clumsily described perinatal palliative care.

So in 2007, Cathleen had never heard of such a thing. And even if she had, she'd never thought she'd need it. But that didn't mean she was having an easy pregnancy.

WARNER: And from the very beginning, I had thought there was just something off. But the pregnancy just felt very different.

And I was an older mom, so I was 39. But I just felt this was, there was something wrong. So there was just something telling me that we should go get like an amnio or something.

CHAKRABARTI: Cathleen was barely 10 or 11 weeks pregnant, still in the first trimester, when she got a genetic test.

WARNER: I didn't think it was going to be anything horrible. I thought it was going to be something that we could just deal with. And lo and behold, it came back that she was diagnosed with what was called Trisomy 18. And it's not compatible with life.

CHAKRABARTI: Also known as Edwards Syndrome, Trisomy 18 is a rare genetic condition caused by the presence of a third copy of chromosome 18. It causes severe congenital heart and kidney defects, low birthweight and poor muscle tone. 95% of fetuses with Trisomy 18 do not survive a full-term pregnancy. Most are miscarried or still born.

That was the devastating news the doctor shared with Cathleen and her husband.

WARNER: We did start talking about if it's just the heart, could we get a heart transplant? And the way the doctors described it to us is that, it's the DNA that's not what it's affecting in the baby is not, you can't fix it.

It's like a house built on sand. You can maybe fix the heart, but there's going to be all the other issues that will come around it that are just not going to make it compatible with life for her. We just left after that saying what do we do? We didn't know what to do. Our doctor had, did advise, that we should terminate the pregnancy.

But it was just our heads were reeling. So we really couldn't make a decision that day. It's interesting though, because everyone was advising us to terminate or whatever. But what I found odd was when I would go to the doctor, like my doctors that I had. They all said that they would not terminate the pregnancy.

I would have to go to like a Planned Parenthood, like our doctors wouldn't do it here in Virginia.

CHAKRABARTI: Cathleen is also Catholic, and she says that “complicated” things a little, though she supports preserving abortion access. She simply didn’t know what to do. Her mind was still reeling from knowing that the baby she was carrying wasn’t going to live.

WARNER: Looking at my two beautiful children, I just couldn’t do it. I just couldn’t go down that path.

CHAKRABARTI: Cathleen was up late one night researching Trisomy 18 when she stumbled upon a service she’d never heard of. Perinatal palliative care. It was described as a service for families who’d opted to continue a pregnancy after receiving a life-limiting diagnosis for the fetus. Families could get assistance with birth planning, deciding what kind of care they wanted for the baby after birth, social support, and grief counseling. The program was run by Tammy Ruiz Ziegler at Mary Washington Hospital. That was Cathleen’s hospital.

WARNER: For me, it really was I was looking at my other 2 children and, I just felt it was important to give Erin as much of a chance at life as she as she could have.

CHAKRABARTI: Cathleen sent Tammy an email at 3 in the morning. They talked the next day and began planning how to make Cathleen’s daughter’s life as cherished and comfortable as possible, even if that life would last only a few minutes.

By April 2008, Cathleen was 34 weeks pregnant. She went to one of her regular prenatal appointments.

WARNER:  And her heart rate was about 80 and, sorry, I might get a little emotional. And the doctor said to me, this might be the start of her passing, because her heart rate is just declining and it's so low. And I said, okay, I said, is there any chance that we could. You know, we were having a C section because I had already had two C sections, with the other two. so, I said, is there any way that we could maybe have the C section now so we can hold her alive?

And that was on a Monday and the doctor's like, well, you know, we really can't do that because then it looks like it's like we're terminating a pregnancy. But because we have this diagnosis, we can go to the Virginia board of Medical Directors or whatever and get special permission to do this based upon you have a diagnosis that is not compatible with life. So, they jumped through some hoops that night, they were making phone calls. And by Tuesday, they said that we could deliver Erin on Wednesday. So, we were able to get my parents into town. Kurt's mother was able to get into town. And on Wednesday morning, we, first thing in the morning drove down to the hospital and we had her.

CHAKRABARTI: It was April 3rd, 2008. Erin Mara Warner was born via C-section.

WARNER:  Oh, I was thrilled that I was able to see her alive. We just held her close, you know, right next to me. I mean, they were still kind of working on me after she was born. So, they were able just to lay her up on my chest and I got to hold her. So, they'd let me do everything I needed to do.

We had a priest there in the delivery room who baptized and confirmed her. We had a photographer who came and took pictures. So we have an entire book of pictures of Erin. We have handprints and footprints that we were able to give, so that we kept, and we were able to give to both my parents and Kurt's parents.

CHAKRABARTI: Perinatal palliative care is as much for the family as it is for the infant. The care team gave Cathleen and her husband guidance and support on how to gather mementos of Erin even before she was born. They did. Cathleen still has a recording of Erin’s heartbeat taken during a pre-natal sonogram.

CHAKRABARTI: In the minutes after Erin’s birth, that small heart was failing quickly. Doctors and nurses kept Erin warm, pain free, and comfortable.

WARNER: And then they took her out to meet my parents and my parents held her and my mother-in-law held her. And then they came back in with her and about 30 minutes after she was born, she quietly passed in my husband's arms.

CHAKRABARTI: Erin lived for 27 minutes. Cathleen says they are among the most precious 27 minutes of her life.

WARNER:  It was probably one of the worst experiences of my life, but probably one of the best experiences of my life too.

CHAKRABARTI: That’s why Cathleen objects to how perinatal palliative care has been politicized and wildly mischaracterized by campaigning politicians.

WARNER: There are children that die from SIDS. They would fall underneath this type of care as well. There are children that are born stillborn. There are women who have miscarriages. And all of this falls into underneath this care. So it is something that is definitely very much needed. After the funeral and after everything and looking back, I knew it was the right decision for our family. As painful as it was, I don't regret it. And I don't think that anyone goes into this and saying, Oh, this is an easy decision, because it's not.

Part II

CHAKRABARTI: Today we're talking about the truth and reality about perinatal palliative care. What it really? And before the break, we heard the story of Cathleen Warner and her experience with this kind of care with her daughter, Erin. She got that care at Mary Washington Hospital in Virginia.

And you heard Cathleen mention a specific name in that story. Tammy Ruiz Ziegler. She's now a retired nurse and bioethics consultant, and she worked extensively in this field for 19 years. She is the person who helped Cathleen and her family through the perinatal palliative care experience, and she joins us now.

Tammy, welcome to On Point.

TAMMY RUIZ ZIEGLER: Oh, thank you for having me. I really appreciate it.

CHAKRABARTI: Can you first describe to me from your experience, what it was like when Cathleen first called you or sent you that email saying, here's my situation, I need help?

ZIEGLER: Yes. I will share that I worked as a neonatal ICU nurse for numerous years and somewhere in the midst of that, I started to feel a calling.

I loved still taking care of these babies, but I wanted to, I found myself always really interested in the cases where families were experiencing the hardest outcomes, the tragic cases that we had to take care of and I found such an affinity for taking care of those families.

And I could tell that communicating well with them and providing for their needs was really a helpful thing. So at some point I switched over from being a neonatal ICU nurse to being a perinatal bereavement nurse. And so I started working in cases of miscarriage, stillbirth and neonatal death.

So the way that we term it is that if I'm taking care of a baby that died before they're born, generally, I refer to that as a bereavement situation. And then when we are taking care of a baby that we expect to die at birth, that is a palliative care situation. So there's a little bit of language difference, but it wasn't unusual in that job.

I would often get phone calls and a person would say to me, I'm looking for a nurse named Tammy and they would start to cry. And whenever that happened, I usually told them that they probably got the right Tammy and I would be just patient and sit there and wait until they had their opportunity to be able to speak to me and to tell me what their story was. And every story is a little bit different. And about three to four times a year I would get a call, something very similar to the one that I got from Cathleen. And what I think was often very soothing for them is that from the moment they got the diagnosis, most of the people that the patients will talk to are so frightened and upset by it that they can barely have a conversation.

And so one thing I found was always really surprising to them was that when they got me on the phone and we started talking about it, I didn't get scared and run away, or change the subject or tell them, give them platitudes that were not really helpful, that we actually engaged in a conversation about what this is really going to be like.

CHAKRABARTI: It's really hard to fathom what being in that situation would be like. And especially, in Cathleen's case, through a process. She had arrived at a place where she was gonna continue with the pregnancy. That isn't always a choice that people have.

Because they get the diagnosis at different times in her pregnancy. And we'll come back to that in a second. But after that first phone call, what's the next step in terms of helping families, especially if they're getting, they're looking down the line and saying, I only have three or four or five months before this baby is due to be born.

ZIEGLER: Yeah. So I do two things, especially, more than that, but one of the first things I try to do is to get to know the family as well as I can, because everybody is just so remarkably different from each other and what's going to be really helpful for one family is not going to be helpful for another family.

So I found that the time that I spent talking to a family about just who they are, who are you as a couple, who are you with your children, your family, your faith traditions? All those kinds of things are very helpful, because right there in the midst of a delivery very often I have to be the voice for them. Because the mom is in the middle of giving birth and the other team members need to know what's the next step. And sometimes it's me telling them what that next step is because the mom told me what she wanted. I also then interface with the physicians that have been taking care of her to find out exactly what the diagnosis is and what their prognosis is, to get the best sense of what we can actually expect.

CHAKRABARTI: Yeah. Can I just jump in here? For just a second. So when you say that you've talked to, you've spent time talking with the mom or the family about what they wanted, what are some of those things, right? Is it what we heard from Cathleen? Like what the footprints or what are you talking about specifically in terms of fulfilling a family's desire?

Yeah, go ahead.

ZIEGLER: Where the rubber meets the road is, I used to have a phrase that I would wait until it was the right time to say this, but I would say to them, if you had an hour to spend with your baby, what would you want to have happen in that hour that would be most meaningful for you?

And so I did find that a lot of times these cases, the babies would be living for between a half an hour and an hour. And so that put a certain framework around it. And so it let them think, really, what would I want to have happen? For some families, there are religious rituals, they would want to have the baptism and a confirmation.

I had a delivery very similar to Cathleen's a few years later, where the mom also wanted a baptism and a confirmation, but their family language was  Spanish. And so I brought a Spanish speaking priest into the operating room, and it was twins. So one twin got baptized and confirmed, the one that was going to die.

And the one that was going to live got baptized, but not confirmed so that he would get confirmed later on in his life. And it was all in Spanish. And that was like another example of it. But some families want these really sacred religious traditions followed. I had one dad who really wanted to bring in a video of his favorite TV show, which was world wrestling, and he wanted to show his son that thing that he had such a love for.

And so they played a video of Stone Cold Steve Austin coming into this wrestling thing on the Coors beer truck, and the dad stood there holding his son in his arms, and he looked up the TV, and he said, Hey look, and that meant everything to him. And, it was quite cute and it was quite silly, but all of us in there were really respectful of the fact that was the experience that dad wanted to have with that son in that moment.

CHAKRABARTI: I find it profoundly moving, actually.

ZIEGLER: Yeah, and during COVID, we had situations where the families could not come in and visit and meet the baby who was dying. So twice during COVID, I had a dad and I left the hospital with the baby in arms and went out into the courtyard into the sunshine. And introduced the baby to their family so that the family could see them alive.

And then dad and I went back into the hospital so that baby could be with mom. But that ended up being something where everybody could, in the family, was able to see the baby and know that they were real and have had that experience. And I find the more people who met the baby, the more people that are, who will really recognize the magnitude of loss that the parents experienced, and they will be better support for the family afterwards.

Some families are very, they really want their other children to be there. So sometimes the other children are in the room at the time of the delivery. I've had two different families that wanted their surviving children to give baths to the baby that died. And I remember one family, The sister who was going to be giving the bath was only two and I was so afraid that she was going to fall down if she had to stand up on a stool.

So instead we did a picnic style and I put a blanket on the floor and a bathtub on the floor and we all sat around on the picnic blanket, so to speak, and bathed the sister who had just died.

CHAKRABARTI: So Tammy, these are so many examples of how, as much thought as possible, given the time that the family and you have before the birth goes into those critical moments after.

And it's very much not just medical care, right? You're describing spiritual care, religious care, psychological care for the whole family.

ZIEGLER: The whole family.

CHAKRABARTI: So let me just ask a blunt question. It does not sound like it is what the former president described, which is the baby gets born, put aside, and then only there's some kind of conversation between the mother and doctors.

ZIEGLER: Yeah, that was really a horrible description of something and it has virtually no accuracy to it. And I know when we speak to the neonatologist, who's also going to be giving us some tips on this whole topic, is that it is really important for excellent physicians to be at the delivery, to be able to evaluate and take a look at the baby, to give a a pre somewhat confirmation of what we expect and to be available in case the baby's condition is a little bit different than we expect.

And that's where an expert assessment is involved. And that's why we need to, I think, Governor Northam was trying to describe it, but he just didn't really have the words say it in a way that was really helpful at the time. But yeah, the babies are assessed by physicians or nurse practitioners at the time of the delivery.

So we can really confirm the presumptive diagnosis. And if something is different than we expect, then the physician talks to the parents and they decide whether or not they're going to change the palliative care plan. Or if the parents have decided they wanted to go for more aggressive therapies, which is not really common.

It doesn't really, I only had that happen maybe once or twice.

CHAKRABARTI: Tammy, this is actually a great moment to introduce the person that you hinted at, which is Dr. Sara Peeples. Yes. She's with us from Little Rock, Arkansas. And Dr. Peeples is an associate professor of pediatrics and neonatology at the University of Arkansas for Medical Sciences.

She also works at the Children's Hospital in Arkansas and is trained in perinatal palliative medicine. Dr. Peeples. Welcome to On Point.

SARA PEEPLES: Thank you for having me.

CHAKRABARTI: From the physician's perspective, can you tell me a little bit more about what exactly the palliative part of perinatal palliative care actually is?

PEEPLES: I think it's important to recognize that palliative care is medical therapy and it is providing appropriate medical interventions for that particular child in the context of their diagnosis and prognosis and the overall goals that the family has for their child. And I think that misconceptions about palliative care and comfort care and hospice medicine are not limited to politicians or other people.

There are people I work with in the hospital that still think that comfort care is a lack of care. That's not the truth. It is appropriate medical care. It is doing what we can do to enhance the quality of life. And then in some cases where we don't have opportunities to provide length of life, we make sure that the quality is appropriate and that we are providing a peaceful and dignified death when that is what is going to happen.

And as we heard from Tammy, a huge part of this is providing psychosocial, emotional, and spiritual support for the families and the caregivers, and in addition to the medical therapy that we're providing for the baby.

CHAKRABARTI: So can you tell me more about, I understand that there's a specific protocol, and in fact, there was a time that across the country, I think, physicians were trying to work towards getting a sort of a standard of care for this particular service.

But we're talking about infants that are almost always born with severe birth defects and congenital birth defects and genetic problems as well. So what kind of comfort care are we talking about?

PEEPLES: In some cases, I think, especially if time is very short, the most comforting thing I tell families for a baby is to be held, and swaddled, and to be warm, and to be close to a mother or father, and have that connection with a caregiver.

CHAKRABARTI: Are they in pain? I think parents often want to know, is their child going to experience pain?

PEEPLES: And we talk about that a lot, and what options there are medically, to bring provide comfort, if we experience pain. Some mothers will want to provide drops of breast milk or colostrum and babies can taste that and that can be comforting for them and that's a bonding experience.

In some cases, if we're worried about pain or suffering and the patient looks like that is the case. We can even offer medications for that and you can offer small doses of medicine even in the cheek or under the tongue or other ways that we can provide a comfort for that baby. So there are medical interventions and there are non pharmacologic interventions and having family support and family togetherness and skin to skin care and that contact from the family, that's unbelievably comforting for a baby.

And sometimes what we do is help the family recognize that and know what they can do as caregivers that are providing that comfort for their child.

CHAKRABARTI: Tammy, I'm going to come back to you in just a second, but I'm cognizant of the fact that I'm speaking with two medical professionals who are experiencing this kind of the need for this kind of care all the time.

But in the broader context of American maternal care and neonatal care, Dr. Peeples, how common is perinatal palliative care?

PEEPLES: I think that's a little bit different, difficult to answer depending on where you work and what your resources are. In some places there are lots of hospitals and lots of access and lots of programs.

It's a little bit different for us in Arkansas, I feel like, because of the way that our medical system is structured with access to care. But I would say at least for me, once a week, I'm having a conversation with the family or attending a delivery or working with the family who is facing a life limiting diagnosis for their child.

And that happens a lot in the neonatal intensive care unit as well, where we are having conversations after a significant complication or something else has happened to help that family make ongoing medical decisions in what is the best care for their child. So it is probably much more common than many people realize.

CHAKRABARTI: The need for it, you're saying?

PEEPLES: Yes. And even when you talk about pregnancy and infant loss, I think the statistics are that even one in four pregnancies in the United States ends in some sort of loss, whether that's early pregnancy loss or stillbirth or a death shortly after delivery. And that is a very common occurrence.

And I think a lot of people do not recognize how frequently that is happening in our country.

Part III

CHAKRABARTI: I think when we're talking about pregnancies that are carried as far as possible to term, we're talking about pregnancies that are in the third trimester.

And the former president brought this up when he said, it's an execution, quote-unquote, in the context of abortions that sometimes take place in the third trimester. Tammy, let me come back to you for a second here. When we heard Cathleen's story earlier, she wanted to carry Erin to term, but it was at week 34 where Erin's heart rate started dropping.

Her care team said, We should probably, if you want to hold your child, we need to have a c section now. It was very interesting for me to hear that the care team was concerned that they would be thought of as trying to perform an abortion on Cathleen. So can both of you, and Tammy again, I'm starting with you, help us understand are we talking about abortions here when we're speaking of perinatal palliative care?

ZIEGLER: Yeah, this is one reason why I went and got my Masters in bioethics. Is that I wanted to be able to engage in these conversations and do it effectively and accurately. The cases that are considered perinatal palliative care are cases where the baby's condition is so severe that for the most part, all the interventions that exist ultimately would not allow the baby to live.

And sometimes there's circumstances where interventions could be started, but that doesn't mean they're actually going to benefit the baby. And so there is a real difference between cases where we believe that a baby is going to be sick or a baby is going to be untreatably sick to the point where a death, their death is unavoidable.

And for palliative care cases the ones we really consider palliative care are the ones that the studies prenatally that were done really show that virtually no treatment options are going to be helpful for the baby. Neonatology is such a big and complex and wide scoped expertise.

There's amazing things they do that save baby's lives every day. But there is this cohort of babies, although small, that this care really needs to be offered to the families. I think that the average person doesn't really understand the difference between sick baby and intractably sick baby.

And so that's where the neonatologist being able to give expert descriptions about what's possible and what's not possible is so helpful for families. I really appreciate what Dr. Peeples said about the fact that this is not no care. This is specific expert care, providing the best experience for the baby so that the baby doesn't experience pain.

And I find in almost every circumstance that I ever was contacted by a family, I found that parents really wanted very early in the conversation to discuss the issue of pain and suffering. Because the people out there in the culture that don't understand palliative care, there is, I've heard, seen many times, especially online discussions, where people who are against the concept of offering palliative care, they believe that carrying a pregnancy into the third trimester and allowing the baby to be born and to die a natural death is somehow cruel and painful for them.

And yet I find that and I've also heard this from neonatologists who have shared with me, is that most of the disease processes that cause babies to die during infancy, they're not very often very painful. And if there are circumstances of potentially being unpleasant symptoms for the baby.

That's where again, palliation comes into play. Palliative care has many domains, physical, psychosocial, and we're addressing all of those.

CHAKRABARTI: So let me turn back to Dr. Peeples, because Tammy's bringing up some really important subtleties and nuances that we need to understand here, because I think one of the reasons why this particular form of care has come under scrutiny from people opposed to abortion is that we're talking about palliative care, so comfort care, as you said. But they still believe that every infant that is born deserves or should have life preserving care given to them, which is not what happens in these cases.

Can you talk about that a little bit? What's the difference and why the difference, Dr. Peeples?

PEEPLES: And sometimes we're not sure about what a baby is or is able to do after delivery. There's some families that I meet with, but there's a great degree of uncertainty in the prognosis after delivery.

And sometimes we provide very intensive interventions and resuscitation immediately after a child is born, in order to gather more information or to confirm a diagnosis or to give some family some time. And then we can continue to alter the plan of care and change the medical therapies based on that particular infant's response to our care and the things that we can find after delivery that maybe we weren't able to confirm beforehand.

Every case looks a little bit different. I have provided intubation and other medications, and sometimes very intensive management after delivery in order to make sure that the family is able to receive the care that they need and feel like they've done everything that they can do for their child.

I think our families navigating these very complicated medical situations, in some cases, are just trying to be good parents. And they're trying to figure out what that looks like for them and their baby. And I hear things like, I don't want to give up on my child, but also, I don't want to be selfish.

I don't want my child to suffer. And this is not just for perinatal care, but in pediatrics and adolescence, in adult medicine. There are some things that we cannot cure. There are some things we cannot fix. There's some circumstances in which the things we would do to prolong life comes with suffering and pain that exceeds the benefits potentially.

And in those cases, we talk about redirection of our care to focus on comfort and other medicines. But it's not a lack of care, it's not a withdrawal of care, it's not inappropriate medical care. It's not hastening things. It is allowing the natural progression of disease and providing appropriate therapy to that patient and family at that point in time.

And those things can change over time.

CHAKRABARTI: Yeah. Can you just, I want to hear your point of view on the question that I asked Tammy about, are these abortions if the labor has to be induced?

PEEPLES: I don't feel that way personally. And there are certainly circumstances. I'm a neonatologist and what I do most of the time during the day is take care of babies who need to be delivered early.

And that happens for any number of reasons. And we still provide appropriate intensive medical therapy after delivery to save the life of that child, until we have a reason that we need to talk about focusing our care in a different manner. We care for babies that are born sometimes as early as 22 or 23 weeks' gestation and are delivered for any number of reasons, sometimes maternal and sometimes for the benefit of the child.

And that is intensive care that we're offering. And I think that a lot of what we do looking at delivery really also depends on the goals for the family and if a mom is in preterm labor or if a mom is getting sick, and we need to deliver for that reason. Or if there's something going on with the baby in utero and this family stated goal is to meet an infant with a heartbeat, that changes the care that we offer and the plans that we provide.

And sometimes that means we do a C section delivery, but all of those things are really focused on the goals of the family, what they've stated is important to them, and how within the confines of medicine, we can help accomplish the goals that are important for them as a family.

CHAKRABARTI: Tammy, I just want to hear from you for a second about how we got to this place where the world of perinatal palliative care even exists, right? Because a generation ago, there wasn't the kind of genetic testing that we have today. And the technology to assist and care for either very premature infants or very sick infants as we've been talking about also wasn't as developed as it is now. But in addition, and correct me if I'm wrong, Tammy, but I also understood that part of the picture here is that many groups that were opposed to abortion and who wanted women to carry pregnancies to term, said this is an option.

Like the baby, once it's born, even if it's very sick,, can get some kind of care. So don't have the abortion, carry the pregnancy to term. Do I have that wrong?

ZIEGLER: I think that's pretty accurate. But also Dr. Peeples is correct in terms that babies need to be evaluated at the time of birth to double check that what we believe that we saw prenatally is what is really the case, and that's why expert neonatology at those deliveries is so important.

In terms of historically, is that in the nineties this idea of palliative care or hospice care, as it was proposed initially it came to be, there was an army physician named Dr. Byron Calhoun who was taking care of a lady who turned out to have a Tyrosine 18 pregnancy and they offered her termination of the pregnancy.

And she said, no, I don't want to do that. And she spent the rest of her pregnancy trying to figure out how they were going to handle the birth and the death of their baby. And Dr. Calhoun realized that the families in that circumstance who were offered termination, but turned it down, they weren't being given any support whatsoever.

And he said, what if we could come up with something, some kind of an idea so that we could find a way to support these families and to repair them and to not just abandon them when they didn't want a termination. And so he wrote some articles with some other colleagues and that was about 1997.

Those were first published. And programs started to pop up very slowly in the late '90s. There's a group in northern Virginia that was actually doing this kind of care before it had a name. But I first learned about the existence of this when my late husband was stationed in Kansas City and I opened up a newspaper and it said, perinatal hospice to open in Kansas City.

And I almost fell off my chair. I'd never heard of such a thing, but I had done enough work in neonatal ICU that I had seen that what was happening instead was that families who are maintaining a pregnancy where the baby was expected to die, they weren't given any support at all. And then they would show up with the mom in labor and people had to figure out what to do on the fly.

And when I saw this in the newspaper, I thought of course, if you have two or three months notice that something like this is going to happen. Imagine the better plan that you could do with a better preparation for the family, the doctors, the nurses, everybody, that you could do and have a better experience for everyone.

And it cuts down on the panic and the uncertainty. And it gives the family more control and how things are actually going to go. Then we were moved by the military and stationed in Virginia. And I presented this idea to some of the physicians and they looked at me as if I had absolutely lost my mind.

And what ended up happening is that the doc, if the physicians had a chance to see one case go well, it really changed their whole opinion on the idea of preparing families for palliative care situations.

CHAKRABARTI: Yeah I'm gonna just jump in here, Tammy, and forgive me because we only have a couple of minutes left, and it's hard to find a way to bring this conversation to a close because this is an area of medical care and actually, spiritual and psychological care for families that I didn't even know this existed until this whole debacle over the former president calling it an execution came, turned up.

So Dr. Peeples, with that in mind, we've just got a minute or two here. I'm curious what do you really want to see with this care? What do you want people to know, and has politics helped or hurt providing this kind of care to families?

PEEPLES: Part of my role, I think, is to continue to operate as a physician and do what is right.

For the patient and the family, regardless of what's going on in the political world, but know that there are people in different societies and organizations that continue to advocate for appropriate change and for education. There's a lot still of misinformation in the community in general and medical care about what we're talking about here.

And this is like advanced care planning for an adult that has a diagnosis of terminal cancer or other life threatening condition. It's the same type of care that we would provide. We're just doing it in pregnancy for a family who's facing the same diagnosis. We are providing appropriate medical care. We are supporting the family.

We're helping them navigate unbelievably difficult and heartbreaking and tragic and life altering decisions. And it is important for, I think, medical communities and other health care providers and families to know that this is available and that they do not have to walk this journey or navigate this process on their own, that there is a community of people who is here to support them and to support their family so that they can have the best outcome possible in the face of a really tragic and heartbreaking situation.

CHAKRABARTI: Tammy, we only have about 30 seconds left, but I'm going to give you the last word. What do you want to see with this care and people's understanding of it?

ZIEGLER: I think Dr. Peeples is right in terms of just getting the word out and education. There are some really good opportunities for nurses and doctors to get really good education.

I would suggest that people go to perinatalhospice.org. It is a real vault of helpful information for both medical professionals and families. So again, perinatalhospice.org. It's a really useful website for people.

CHAKRABARTI: In case they want to get more information that's not politically charged misinformation.

ZIEGLER: Yes, it's very accurate, on that site. The physicians and nurses that I work with will go to that site regularly to help find the articles and network and that kind of stuff. It's really helpful.