Podcast Episode Transcript: When a Child Dies

GAIL MARQUARDT:
Welcome to the Remembering a Life podcast. I'm your host, Gail Marquardt. Today I'm joined by Kristin James with the Grief Care Network, which is dedicated to specialized grief support across the lifespan. Kristin is nationally recognized for her work in pediatric palliative care and grief support. Also with me today is Betsy Hawley. Betsy is the executive director of the Pediatric Palliative Care Coalition and has over 25 years of experience in nonprofit management in both healthcare and community development. She speaks extensively on coalition building and pediatric palliative and hospice care and works collaboratively to meet the needs of families and medical professionals caring for children with medical complexity. Thank you both so much for being here today and more importantly, thank you for the incredibly important work you do.

BETSY HAWLEY:
Well, we're delighted to be here today with you, Gail. It's a great opportunity to be able to speak about the work that we do and kind of open up a little light onto work and an area that people don't really like to talk about too much. So we're delighted to be here.

GAIL MARQUARDT:
Yeah, this is one of those conversations that isn't easy to have, but today we're going to talk about the impact on families and others when a child dies. We're talking just a few weeks after so many children died in the floods in Texas, which I think made many of us stop and think about how unfathomably difficult it must be when a family experiences the death of a child, whether it's through a natural disaster such as floods, an accident or an illness. So today we're going to start out by talking about children who are receiving palliative care for an extended and possibly uncurable illness. We often think of palliative care as care that is only given to people who are dying, but it's also provided to people who are successfully treated. Correct? And can we start by talking about what palliative care is as especially as it relates to children?

KRISTIN JAMES:
Thank you, Gail, for that introduction. And I think you highlight really an important aspect of palliative care that it really is available to anyone with any disease at any time. And palliative care is really an added layer of supportive care that focuses on quality of life. It uses a team approach and very family centered. And in particular when we think about our children, it becomes even more important that we have that family-centered care. We know we're not just caring for the child, but we're caring for the whole family. And it can really bring in everything from music therapy to art therapy to child life, really to guide that family and those goals of care. And even more importantly, as you talked about, it really gives the family that opportunity to continue their disease directed and curative treatment, really hoping for the best, but bringing alongside that a team that has that specialized care and helping them cope with their pain and the other symptoms that go with that illness and disease.

GAIL MARQUARDT:
Oh, so it's not just pain medication. It's not just medication focused, it sounds like it's much broader than that.

KRISTIN JAMES:
Absolutely, and it's really is about the goals of that family. But even if it is pain management, we know that there are so many other approaches than just medication. So our amazing palliative care teams can bring in anything from mindfulness and yoga to pet therapy to massage, and there's so many other approaches that really can help that family cope with not just the symptoms of the disease, but the stress that goes right alongside that.

GAIL MARQUARDT:
That makes total sense. Does palliative care tend to be provided more in a hospital setting or in the child's home? What does that look like?

KRISTIN JAMES:
Well, you're going to hear us wave our flag and say that palliative care should be available to any child regardless of a setting. Unfortunately, there's really limited funding right now. So that's really where Betsy and I spend a lot of our time in our advocacy that traditionally palliative care has been more hospital-based, but we want kids to be home. We want families to be able to be home, and we know when we can provide that high quality care, that specialized care in the home, it's better for the whole family. So we work very actively in trying to build up our home-based teams to keep families where they want to be. Right.

GAIL MARQUARDT:
Yeah. So tell me a little bit more about that advocacy work and what you're doing to help ensure that children can have this kind of care wherever they are.

BETSY HAWLEY:
Sure. As Kristen mentioned, the availability of community-based palliative care, which would be along the same lines as community-based hospice care organization, a healthcare organization within the child's community that can take care of the child and family right there instead of having to go to the hospital. There really is no for funding that. And in states such as Illinois, and Kristen has been on the forefront of this advocacy work, they've passed a bill that will allow for pediatric palliative care to happen in the community to extend the services of a pediatric hospice to go outside that six month hospice benefit and be able to take care of kids from the time of diagnosis, which is really where it should happen. So it's kind of happening on a state by state basis as far as community-based, not only pediatric palliative care, but adult palliative care as well. Several states have passed an all age palliative care Medicaid benefit to help better care for all of us all across the age spectrum, but much of that work takes state by state advocacy.

GAIL MARQUARDT:
Okay, that's really interesting. I was unaware of that. That's really important work to be doing, so thank you for that. So tell me about the relationship between hospice and palliative care. Do those two exist at the same time? And is a child who is dying generally always transferred into some kind of hospice care or not necessarily? How does that work?

KRISTIN JAMES:
Good question, Gail, and I think it's important to kind of clarify even what the eligibility for hospice is that hospice really is focused on end of life care. To be eligible for even hospice, you have to have a prognosis of six months or less, and for the adult population in particular, but with children, we know it's much harder to make that six months or less prognosis. So we really want to step back bigger and provide that palliative care much sooner and their disease process. And the other really big challenge with hospice is, again, with the, you are technically supposed to give up your disease directed treatment, but again, we know with families it's almost impossible to give up that hope for a cure, a hope for a change. So in the pediatric population, we have what's called concurrent care where you can continue to receive both your primary care, your disease directed care, and add your hospice team to your care team. But again, that can be really difficult for families to make that transition from palliative care, which can be anytime in the disease process with any goals to really when we're looking at less opportunities for that child to get better. But the ideal would be for that seamless transition to happen if we've been able to have that palliative care team work with that family sooner to really be able to begin those difficult conversations and difficult,

BETSY HAWLEY:
I would say in the perfect world, at the time of diagnosis, any person, whatever their age would have a palliative care team to work with, and then when they got to the prognosis of six months or less of life, they would see mostly transition into hospice care to see them through to the end. But since nothing seems to work in our healthcare system seamlessly or as it should, we know that there are a lot of different ways that people are receiving care across our country.

GAIL MARQUARDT:
Right. I can see where it, it's incredibly challenging,

BETSY HAWLEY:
But I would say just to kind of in general, remembering that hospice care is a part of palliative care, palliative care is the whole spectrum, and hospice care is the end of life of that spectrum.

GAIL MARQUARDT:
So when a child is expected to die while receiving palliative or hospice care, how does the care team help prepare the child and family for the child's death?

KRISTIN JAMES:
Well, Gail, as you can imagine, that is one of the most difficult times for a family. And again, in the ideal world, those conversations would've happened gradually that we would've been talking with the family, communicating with the family, what those changing needs are of that child and that family. And we often talk about what does hope look like today that we know when those changes are starting to occur. We want to have that active conversation with that family. But it's also really important to consider the developmental needs of the child. And many of our children in particular are children who are in palliative and hospice care may not have the same developmental and verbal capabilities to be able to participate in that decision making, but it's important to the degree they can that we include children in those choices. Kids are remarkably smart and they often know what's happening.

They just need someone brave enough to be in that conversation with 'em. We have remarkable stories of kids, even as young as five, drawing pictures of rainbows or starting to give away their toys. They're often aware. It's just if we're willing to be brave enough to be in that conversation to engage them in what they would like their funeral to look like, what would they like their memorial service to look like? But you can imagine that it's really difficult for a parent yet very empowering if the child's able to help that parent make some of those decisions. And I think it just tracks back to that care team and that care team's ability to really be compassionate, to be honest, and really empower that family with choices. We know there are limited choices, but do you want your child to be home? Do you want your child to be here? Who would you like to be with you and your child at that time? There's some amazing opportunities to really continue to care for a child, whether it's simply a massage or lotion or stroking their hair or the blanket on the bed. And so we really try to empower that family to continue to care for the child in the most loving way, even at their end of life and even after that child dies.

GAIL MARQUARDT:
It is such an unfathomably profound loss. It sounds like in some instances the children may actually be supporting their family in their grief.

BETSY HAWLEY:
That absolutely is the case. We do hear of, Kristen has worked with families in the hospital, so she can attest to it more. But I know there certainly are stories where children have actually said, I know I'm dying, but don't tell my parents to the nurse. At the same time that the parents are saying, we know our child is dying, please don't tell our child. So sometimes that communication barrier needs to be broken by a healthcare professional.

GAIL MARQUARDT:
So in what other ways do children process their own grief when they know that they are going to die? You mentioned some things.

KRISTIN JAMES:
Well, I think it is oftentimes it's asking hard and yet simple questions. What do you most fear? Do you fear being in pain? Do you fear being alone? So I think until we ask a child, we don't know what they're thinking. We don't know what they're feeling. And so really being able to be in that difficult moment with a child to ask those questions, and often it's, they're also often, as Betsy said, worried about their family. Who's going to help my mom and dad after I die? Who's going to take care of my dog? We have beautiful stories of just even as a child is dying, the pets being on the bed, what brings that child comfort and giving them some control. As you can imagine, as anyone is sort of approaching their end of life, it's really important to give them control where they can have it, to give them choices where they can have it. And that goes not just for the person who's dying, but that whole family system that they do have some choices.

BETSY HAWLEY:
There is a great tool called Voicing My Choices, which is actually an advanced care directive for adolescents to think about some of those issues. And just looking that up here, a planning guide for adolescents and young adults. It's produced by the same people who aging with dignity, who do five wishes. And there is also one called My Wishes for young children to actually be able to process their feelings on paper. And many of the same things that you would see in a healthcare directive for an adult are right in here, but it's just as Kristen mentioned, giving choices, giving opportunities for processing what that child and that family are going through. So reaching out for some of those tools.

GAIL MARQUARDT:
Yeah, it's wonderful that those tools are available. I had no idea. So along with the pain of the loss, do parents ever experience a measure of relief? And if so, how do they process that emotion?

KRISTIN JAMES:
You are naming a really hard emotion to acknowledge, but there are definitely times in part particular in a situation where maybe their child has suffered, suffered in great pain, suffered in great isolation, and didn't have the quality of life that that child wanted or that as any parent would want for their child, that there can be a sense of relief that their child is no longer in pain. But there's a really hard emotion to acknowledge, and sometimes we have to give that permission to a family that you did every loving act. You made the best decisions you could out of love and best interest for your child and your family to allow them to feel or acknowledge some relief. But it's a really hard emotion

GAIL MARQUARDT:
Because I imagine you don't want them to feel guilt along with that, that they're feeling that level of relief.

KRISTIN JAMES:
And I think any parent, regardless of how their child died, will struggle with the what ifs should haves and could haves. I think all of us do that, and even more so when it's a child and we feel as a parent, it's our job to protect 'em, that somehow we failed our role as a parent when we couldn't protect 'em. So it's important for a parent to be able to ask a little and ruminate in those what ifs and should have, and yet for us to reflect back to them that they made the most loving decisions they could at that time with the information they had and really affirming that their decisions were a love and out of care and continue to be able to reiterate back to them those loving acts. Oftentimes we even work with our families in taking photographs even at the end of life, so they can reflect back on, look how you loved them.

Look at the love that was surrounded by your child. You made the best decisions you could, and sometimes it helps affirm that parent that a parent was making parenting decisions right to the end. We often say we can't cure, but we can continue to care. And it's really important that we give opportunities for parents to continue to care for their children even at the end of life. And I will say even after their child died. An important part of that is giving parents an opportunity to continue to care for the memory, the memory of that child, the life of that child, and that's really part of the healing process as well.

BETSY HAWLEY:
I was going to say, I think that's one thing that I often reflect on with the death of a child is not only the parent, but the whole family has a whole lifetime to live with that grief. And as time goes on, we haven't even talked about siblings at all, but as siblings grow older and understand things differently, the grief just keeps coming back again and again and again in different ways and needs to be processed in different ways. A dear friend who lost a child was just not prepared for what it was going to be like to go to graduation the year that her child would've graduated. Her other living siblings sons had no idea what it was going to feel like when they understood more what it meant to lose their brother. Or even when they looked back and wondered if they had been caring enough to their brother. People just as a matter of course, go back over things time and time again. So the more work that can be done on the front end to help families process their grief knowing that it's going to be a lifetime for them.

GAIL MARQUARDT:
Well, and I think you often hear, oh, kids will just get over it. I think we think based on what we see sometimes, because we might see children playing or laughing or having fun, we think, oh, they must be coping really well. Talk a little bit more about that and how we can support children who may have lost a sibling or even another relative or a classmate.

KRISTIN JAMES:
Yeah, I think often we do that as adults to protect ourself from their grief. They're doing great, they're playing, they're laughing, and actually it just protects us from having to engage them in those difficult conversations. The kids really need models, models of how to grieve, permission to have different feelings. Kids also need honest information. We often kind of joke, not joke of all the words we use for dead and dying, but what does we lost grandma today? What does that mean to a child? Well, please, can we go find her? We've literally had kids draw maps trying to find their dad. We all use the word loss or go to sleep. So I think one is really using honest information and understanding developmentally what that means. And as you said though, also play is a child's work. Kids will take nibbles of information. We often say they give us that bomb question and then they'll go about playing.

They need a little time to process what information you've given them and they're going to come back to you. They'll come back to you if you are honest with them. They will often check out if you're honest or not, by asking other adults in their life. So I think it's important to be as truthful with kids, to use the appropriate language with kids to give them different outlets. We often talk about kids having different coping mechanisms, so use music, use play, use art. They have amazing ways of communicating with us and may just not be the same verbal language we use as adults. So to give them those tools to really communicate to us what they're worried about, what they're thinking about, what kind of questions they might have, and to be able to continue to visit those questions with them, not just now, but as Betsy said developmentally they're going to change, so their questions are going to change as they get older too.

GAIL MARQUARDT:
Yeah, that's interesting. I hadn't really thought about that, that if a sibling dies when a child is six, even 10 years from then, they may have questions and of course can still be grieving that loss.

BETSY HAWLEY:
They're going to have more questions 10 years later. And interesting in families where a child has been born after the child dies. That child who never even knew the child who died still has a sibling. There are stories about that sibling. There's a place in the family for that sibling, but they never even physically saw that child.

KRISTIN JAMES:
And I think it's important to remember particularly for those children, but I'll try 'em, but the whole family is grieving now. We often say there's a timeline. There's the family before the child died and there's the family after the child died, and it ripples through all the different family members. And you can imagine what that's like. Even though one person died, they all grieve differently. You may have somebody who loves to look at pictures and wants to be surrounded by memories, and you may have somebody else, what's called an instrumental griever, who's the doer, who wants to read the books, who wants to go on a 5K walk in memory of their child. So it can be really challenging as a family system to kind of figure out what everybody's needs are and how we're going to be able to do that as a family in particular, as we're talking about that, I think of the first day of school coming up or the holidays, how are you going to honor that memory? How are you going to honor your family's history? But when everything feels so different, so different.

BETSY HAWLEY:
And no matter every family who has lost a child is going to be thinking of that child on what would be their first day of school, they're going to be thinking of them on whatever holiday morning is most important to their family. We often hear people say, oh, I'm not sure whether to say that child's name. I don't want to upset them. Well, number one, their child's name is forefront in their mind at all times, and I don't know any family that wouldn't say, please, please speak my child's name. That's what I want to hear the most.

GAIL MARQUARDT:
That was my next question. How can people who are out of the immediate family support a family that has experienced the death of a child? Because again, right after the funeral, everyone is still providing meals and stopping by and asking how you are, but there's kind of this six month timeframe where we're kind of expecting people to be over it for whatever reason. And so how can we support that family? I'm always very open about asking people how they're doing and share a story about your loved one. What else can we do to support those parents and siblings?

KRISTIN JAMES:
Just keep showing up, just keep showing up. As you say, six months. In many ways, their grief is just beginning. And so to continue to, whether it's offer to go on a walk, offer to mow, offer to bring a meal, but just continue to show up. So often parents say they almost feel contagious that people start to stay away from them, so fearful of their grief. We have parents talk about, they'll be at a grocery store and they'll see a friend who chooses to go down a different aisle, or they'll be out taking a walk in the neighborhood and the neighbors will choose to go around the block rather than have to have a conversation.

GAIL MARQUARDT:
That's just so sad.

BETSY HAWLEY:
It's very, very real pat. That is one of the biggest things that bereaved parents will, maybe one of the biggest overall things we hear them say is isolation. We feel isolated. It's just too much for people to other people to be able to take in. So I echo Kristen's thought of just keep showing up.

KRISTIN JAMES:
Well, and I think it's important to remember we can hold both joy and grief and so oftentimes bereaved parents feel like they stop getting invited to barbecues or even I had a mom recently say, I was laughing with some friends and I heard somebody say, oh, you must be doing so well. You must be over your child's death. And it was like a gut punch. She will, first of all never get over her child, and it's okay to laugh again. You can hold both. And so actually giving families permission when they're ready in a way they're ready to reengage some joy and laughter and regular, we call it dual processing. That's sort of kind of the contemporary model of grief right now that you're concurrently remembering and staying attached to your person who died while also figuring out this new life ahead of you. And the most helpful and meaningful way is to bring that memory and bring that child. So as you said, Gail, using that child's name, sharing a memory, remembering that person, whether it's on the child's birthday or their anniversary or even as we just said, the first day of school and holidays, acknowledging that loss in a way that's really respectful. I've never heard a parent say they got too much support.

BETSY HAWLEY:
One really interesting thing, I've heard multiple parents say that when they give a name at a restaurant, they give their child's name just to hear that name.

GAIL MARQUARDT:
I do that at coffee shops. My best friend died last November. And so when I go order something at a coffee shop, I give the name Julie and I get to hear her name.

BETSY HAWLEY:
That's so interesting.

GAIL MARQUARDT:
Yeah, it just feels good.

BETSY HAWLEY:
And that's exactly how parents feel, as you can attest to right there, hearing their child's name feels good, and continuing to hear people about their child. Continuing to bring that story up, continuing to include the parent in activities of what other children of the same age are doing.

KRISTIN JAMES:
And as we're talking, can I do a shout out to our dads? We often, particular when it's a child who's died, we focus so much on the mom and kind of that supportive language around the mom, but our dads are grieving too, and they often have less of a support system than our moms do. So I really want to do a shout out to our dads and those in the support system to make sure we're checking in on 'em and checking in on them and what is supportive and how they are grieving and what they need in their grief too.

GAIL MARQUARDT:
That is such a good point. I think too, some dads may be less obvious in expressing their grief for whatever reason. So that is a really good point.

KRISTIN JAMES:
Yeah, unfortunately, so often our culture says to our men, our dads be strong. Well, what does strong look like? Often I reflect back to my dad's, be strong is showing your emotions, showing your family modeling for your kids that it is okay to talk about hard feelings. It is okay to ask really hard questions. We might not be able to answer all of 'em, but we're going to do this together. And so really being strong is really kind of being honest with where we're at.

GAIL MARQUARDT:
Definitely.

KRISTIN JAMES:
And so I think it's really important that we think about our dads, even if it's in just inviting them. Many of our dads say, well, I'd rather go play basketball great, or I'd rather build something and get my hammer out. Great. But finding that way that they can also incorporate their grief and express their grief is so important.

GAIL MARQUARDT:
Right. Excellent, excellent point. How can a funeral or a memorial service help a family and friends say goodbye and begin this incredibly difficult grief journey? What role does that play in this process

BETSY HAWLEY:
In the words of a mom in a video that we often show, the funeral was where the healing began. That was her statement. So it really can be that first part of the healing journey for a family.

KRISTIN JAMES:
We often, when we talk about caring for families after child dies, we talk about what are those different touch points? Where are those different opportunities that we can impact their healing? And immediately when we started this project, Betsy and I came to the Funeral Service Foundation and really that unique opportunity that our funeral professionals have and guiding our families through that sort of last memories, those last moments of their child's life, and really bringing that compassionate community together and creating that healing moment and those lasting legacy for their child. And we have both just been so honored to be invited into the funeral professional world and just the great compassion that they have had in caring for our families after a child who's died. And we hear from our families really from that first phone call, from that transition of care, from preparing the body to planning these amazing, unique and creative memorial services, what a meaningful partnership it has been and having that funeral professional really guide them through such difficult decisions and yet such an honor to be together really and celebrating the life of their child.

BETSY HAWLEY:
I think one thing that was really interesting, well, neither of us knew a whole lot about the funeral service profession, but in doing the early work to put together the booklet that we did, we identified, as Kristen said, the touch points. And that transition of the body was such an incredibly important moment for families. As you can only imagine that moment when you are turning over your child, you're physically turning over your child to somebody else, and so many funeral directors did that and do that with such incredible compassion and give assurance that their child's body will never be left alone while they are in their care calls to say, your child is now here in my care. While every body is important, the body of a child and the care of a child physically feels very, very important to the family and how that transport is made and the number of funeral directors that we have heard say, we will assure the family that we will not leave the funeral home while their child's body is there. We will sleep in the funeral home while that child's body is there. Heard that more than once. So there's a recognition all the way around that this is something very different.

GAIL MARQUARDT:
So you're referring to “When a Child Dies, Planning Acts of Love and Legacy” booklet that I'll talk about a little later about how folks can get a copy of that. But I read in there, one of the funeral directors said that she always reads stories to the children who are in her care, which I thought was really, really lovely.

KRISTIN JAMES:
Well, and this funeral professional had shared with us that this child came in her care late at night and she didn't even have children of her own, but she thought, how do parents take care of their kids at bedtime? And she thought parents read stories. And so she has made it part of her self-care ritual even to read a bedtime story to a child every time that they're in her care and then share back with that parent. And it's really a way, again, that loving act to share with the parents that they're going to continue to care for their child. But I will say for that funeral professional, it was also caring for herself at such a difficult time too, knowing that she was respectfully caring for this child too.

GAIL MARQUARDT:
So meaningful for so many people involved in that whole process. I've also heard about, so the funeral that is planned by the family, but I've heard that in some cases funeral directors will work with children to plan their own service so that they're picking maybe what they sing or what they talk about or what they do, which I think is a really lovely idea because children can have very different ideas of how they would honor someone who has died. Have you heard about that at all? Had any experience with that?

KRISTIN JAMES:
Absolutely. In the best case scenario, there's really that opportunity to engage the child in what they want at their service. As we mentioned earlier, they're actually tools and books that help guide some of those questions, but I want to acknowledge that's in a very small percentage of opportunities, and yet most families know their child. And so engaging the siblings in the same questions. What was your brother's favorite color? What music did they like? What are their favorite toys that, well, we would love to include the child's voice in the service. Sometimes we don't have that opportunity. So it's really engaging that family system and what would they want? And it's a really remarkable conversation. Parents, one of the things they said is we want the funeral director to be curious. We want them to ask me questions about our child. We want them to know our child and we want them to be creative.

We want them to think out of the box. We don't want the traditional ferns at my son's funeral. We don't want the traditional casket. We have these amazing stories of superhero funerals and fairy princesses where everybody comes and they invite their friends to come dressed as a superhero or a princess. We have amazing stories of big wheels. One mom asked for big wheels in the church isles. It was her three-year-old who died, and she was reflecting like my three-year-old, couldn't sit through a service. And so she asked that there were big wheels there so kids could ride around, and it just warmed her heart to see kids being kids in the midst of stuff, grieving the death of her own child. So we really plead with funeral directors to be curious, to give choices and really be more creative. We have just so many amazing stories where the funeral provider created just an amazing service that really reflected the joy and the personality of that child

GAIL MARQUARDT:
That's so meaningful for everyone, the entire family.

BETSY HAWLEY:
Oftentimes when it's a child that dies, this is the first funeral that the family has been responsible for the first funeral that many, many people in the community will attend. So I often reflect that it's a wonderful time for a funeral home to shine in their community. If they do a really wonderful job with a child's funeral and help other young people in the community to understand what memorialization is, what a funeral is, that it's a celebration, they're going to shine in their community as well. They have an opportunity to be a real beacon in that community in that point in time.

GAIL MARQUARDT:
Definitely. I completely agree. This is difficult work for anyone. How do professionals who work in palliative and hospice care address their own grief over the deaths of young people they have cared for?

BETSY HAWLEY:
I think the biggest answer to that is they do address their grief, which oftentimes I think doesn't happen in other parts of the healthcare world. In interdisciplinary hospice and palliative care teams, they take the time to identify that grief and to sit with that grief and to give each other space. Kristen spends a lot of time talking to funeral homes, funeral about giving their staff the space after the death of a child. It's very, very difficult. Even if you are in the death industry, the death of a child is difficult. So ensuring that extra care and time are taken to reflect on that and to sit with that and to understand your role in that is incredibly important.

GAIL MARQUARDT:
Yeah, I know on the funeral service side, when a number of children die, whether it's a mass shooting or a natural disaster, whatever it might be, the funeral directors have established this rule that they each care for one family. They don't care for more than one family just so that they are completely devoted to that family and also for their own self-care because it is so difficult to work with a family when a child has died on so many levels. So they've started to see too that they need to care for themselves as well in that kind of a situation.

KRISTIN JAMES:
Well, and Gail, I think you bring up a couple of important points. One is really just team support. Oftentimes, it falls on one funeral director to do all the children. They have shown a certain talent or a certain ability to be compassionate with families when my child has died. And so being aware of that as a team that may at some point be a burden to that individual or we all are different points in our life. And we've had some funeral professionals who have kids the same age. And so being aware of that and being able to be honest and creating that team that you can really check in with each other. I want to even take one lens back. I think a big part of this project is also education. The more tools we can give to our healthcare providers, the more tools we can give to our funeral professionals, the more confident and comfortable they're going to be in these difficult situations.

So I think long before a death of a child occurs, the more we can give our team the tools, the language, the confidence, then it will help them sustain them throughout this process. We also talk a lot about multiple check-ins, right? We all cope differently. And so having both those formal debriefings where we can get together and talk about it, but also informal check-ins, we're each going to cope differently. And then I think also funeral professionals and our healthcare systems have unique opportunity. They often, we've heard these beautiful stories of funeral homes, hosting services for all the pregnancy losses in their communities and hosting memorial gardens for children who've died. So I think that is also not just for our communities healing, it's often for us as professionals a really healing act to be able to continue to remember the children and the families we've cared for. So I think it's even after that funeral, there are opportunities to continue to weave healing and memorialization even into our own professional identities as well.
GAIL MARQUARDT:
So you mentioned the importance of tools, and we briefly mentioned “When a Child Dies: Planning Acts of Love and Legacy” booklet. So this booklet was designed specifically for families who've experienced the death of a child. But as I read through it, this is a phenomenal resource for anyone in palliative care, hospice care and funeral directors to become familiar with and learn more about maybe how to talk to families and the kinds of things that they might be feeling and how to guide them through that process. It's really an excellent resource, and it is available via the Remembering a Life website, RememberingALife.com/children. And those we're offering free to people who order them through our website because it's such an amazing resource. So thank you both for being involved with that. It's really an exceptional tool for so many people. 

So I ask all of my guests this question, who are you remembering today? Kristen, would you like to start?

KRISTIN JAMES:
Well, it's such a challenging question and I appreciate that. I think, one, I bring forward all the children that I've been honored to care for over 30 years, and they continue to be my teachers and where I put my heart. And I'm also though caring for a friend that just died this past month and really the love that we're surrounding her family and her college age kids. I'm carrying both today.

GAIL MARQUARDT:
I am so sorry to hear about your friend. Thanks. That is a special, very difficult kind of loss. So my heart is with you. And Betsy?

BETSY HAWLEY:
Today happens to be the 10th anniversary of my mom's death. So I am very much holding my mom close and large in my heart today. My mom died of a long death of Alzheimer's, so that took us on a very long path. But she was a very loving and kind person. And despite all of that, all of the Alzheimer's and her whole journey with that, when she died, she was in memory care unit. And in that particular facility, the funeral home brings a gurney in. They put a shroud over and before they take 'em out, all the staff and any family who wants to can gather to say a few things about the person. That was such an amazing experience to have that happen, number one. But number two, the words that the caregivers used to describe my mom got to her very essence, even though she was not at all herself when they knew her. But kindness came out and humor came out, and that was so incredibly touching to me that the essence of her spirit was still coming out to those who were around her, even when she didn't feel like herself to me. But that was a huge gift, that very brief time around her body before it was wheeled out. And thanks for giving me the push to reflect on that this morning.

GAIL MARQUARDT:
Definitely. That story really speaks to the level of care that she received where she was as well.

BETSY HAWLEY:
Absolutely,

GAIL MARQUARDT:
Yeah. Well, thank you so much. I will hold both of you in my heart related to your stories. Thank you so much for being my guests today, talking about this incredibly difficult and complex topic. I really appreciate you joining me today.

BETSY HAWLEY:
Thank you so much for having us, Gail. It is a difficult topic, and we appreciate you giving the time and voice to all of the children that we have been remembering today and all of the wonderful, wonderful caregivers at any stage, whether it's in the hospital, in the hospice, in the home, or the funeral professionals or grief professionals that work with the families. Appreciate the time to be able to sit with this and discuss.

KRISTIN JAMES:
And I'll echo that. Gail, just thank you for your courage. Thank you for your courage of asking difficult questions. And thank you for your courage to continue to be present and present for all of our grieving families.

GAIL MARQUARDT:
And for more information about going through the death of a child and how to honor a child in meaningful ways, visit RememberingALife.com/children. And you can also pick up a copy of When a Child Dies booklet there as well. Really helpful resources.