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Caring for the Child With Cancer at the Close of Life
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Caring for the Child With Cancer at the Close of Life
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>> Welcome to "JAMAevidence", our monthly podcast focused on core issues in evidence-based medicine. I'm Amy Thompson, associate editor at JAMA. Joining me today is Dr. Craig Hurwitz, a pediatric oncologist and the director of the Pediatric Pain and Palliative Care Division at the Dell Children's Medical Center in Austin, Texas. He is also the author of the chapter in "Care at the Close of Life", entitled "Caring for the Child with Cancer at the Close of Life". Dr. Hurwitz, thanks for joining us today.
>> It's my pleasure. >> Dr. Hurwitz, what can you tell us about recent trends in childhood mortality rates? >> Fortunately with many medical and technological advances in medicine, pediatric mortality data from complex and chronic conditions like cystic fibrosis, as well as injuries and sudden infant death syndromes, many of the childhood malignancies, to name a few, have declined substantially in the last decades. In fact, a study published in the early 2000s by Dr. Chris Feudtner, I recall showed that the annual death rate of chronic complex conditions has actually decreased for almost every age group, with the exception of patients in the greater than 20-year-old age range.
I believe he subdivided them into 20- to 24-year-olds, and in that age group, the rate of death actually increased, which suggests, of course, that these younger children now with chronic complex conditions are living actually into their third decade of life. So we may actually be in a state where we need to redefine the whole term of terminal illness. >> So what makes treating children at the close of life particularly complex?
>> Well, the death of a child is, fortunately, a relatively rare event in our country, compared to adult deaths; and it's a very tragic event. But this relative rarity of pediatric terminal illness, compared to adult illnesses compounded, with the variability and age, I mean, children die from infancy up to the age of 18, make it difficult for most medical caregivers to develop an expertise with having the knowledge and the skill set necessary to deliver best practice and best care to all of those children.
Infants generally die from a genetic disorder of inborn errors, of metabolism, of mitochondrial disorders. Older children die predominantly of trauma, of accidental death, of more of malignancies and things like that, and to really have an expertise and the knowledge of all of those different entities is difficult to develop the skills necessary to deliver that kind of care.
On top of that, one also has to have a knowledge and a skill set to deal with the various developmental ages of children as they are dealing with advanced illness, and also with their families. So trying to help these children and their families cope with death becomes a very complicated and complex situation. >> You mentioned treating children across a range of developmental ages. During my own training in pediatrics, I encountered the saying, "Children are not small adults." And for me, a significant part of the truth in that saying is due to that dramatic developmental progression that kids go through as they grow up, and how that affects their care.
>> This is in particular a really important distinction between caring for an adult and caring for a child. When you care for a child with an advanced disease, you really have to be acutely aware of that child's developmental age and how it's affecting his or her understanding of dying. When you look at most of the qualitative data and research, and clinical experience for that matter, you begin to see that most of it really is generated from how children adapt and process the death of a loved one, like a parent, but very little is known about how children, in fact, deal with or think about their own deaths.
So much of what we know has to be extrapolated from the existing data. And when you look at that, it's clear that the developmental stages of children do inform how a dying child might express his or her hopes and his or her fears. So for example, children one to three years of age have a very limited understanding of accidental events and a future pastime. And you may hear them actually say things like, "Mommy, when I die, how long is it going to be before I live again," or, "Daddy, can you still tickle me after I die," because death in these children is viewed as a continuum of life, almost like a different state, like an awake and a sleep cycle.
>> Children who are three to five years old also struggle with that concept of death being irreversible. So how does their understanding of death differ from that of younger children? >> So a child of that age has a very limited understanding because of their egocentricity, and believes perhaps that he or she somehow caused the death, or views it as a punishment. In fact, death is often viewed as an external force that is occurring, and death is personified; so the bogeyman might be coming after you.
>> There's a big shift after that age as five- to ten-year-olds are really beginning to understand that death is permanent. >> These children do understand that death means that your heart stops, that your blood no longer circulates through your body, that you stop breathing. These children may not accept that death can happen to them, but may understand that death can happen to people that they actually love; and they know that those people will at some point begin to die.
It's important in this age group to be very honest and to provide specific details if they're asked for. These children particularly need help and support, and need permission and encouragement to participate in decision-making in a way that makes them feel comforted and not to feel afraid. And then you have young adolescents who really begin to think in an abstract manner, and in a mature manner, and understand that death is final and is universal.
But they also will begin to see death as a result of punishment or poor behavior, perhaps. You may hear them say, "I'm afraid if I die, my mother is not going to be able to get through life." And they will begin to protect their loved ones. And so it's important to reinforce their self-esteem and their sense of self-worth. >> In the book, you note that older adolescents continue to develop a more adult understanding of death, and that particularly in this age group, a child might think of death as an enemy to be fought against.
>> Their thinking is much more abstract, and you can interact with them in a much more of a mature form and admit and speak with them in an adult language about how this is unfair and how it's awful, and that they're doing an incredible job through it, and ask them the open-ended questions to try to elicit more about what their hopes are, their fears are, their worries are, and help them deal with it in that way. >> What's important to you during that difficult initial conversation?
>> When I first meet the child, they're usually scared; because they know that something's not right. They're in the hospital, and the hospital is not a fun place to be. So when I first meet them, really all I want to do is listen to them, and find out who they are and where they're coming from. >> I imagine most parents want every available option to be explored in their hopes for a cure. So what happens when therapies haven't been successful, and curing a child's disease, in your opinion, is no longer a realistic goal, but a child's parent still wants to pursue every possible treatment?
>> I never try to convince anybody of anything. And I think most families are hoping for that miracle, and they're also hoping and wanting, and very much desirous of comfort care. So they want these concurrent goals that on the surface seem very far apart. But the Affordable Care Act has actually recognized that that's where the vast majority of parents and families are with children, and that they deserve that.
So in this country, if you have Medicaid and you are eligible for hospice, you can get both cured as in life-prolonging therapy, and be eligible and receive hospice at the same time, right? You can't do that if you're an adult. If you elect to have hospice care, you must forego life-prolonging therapy. As a child, you can have both. >> That's a pretty enlightened approach. What exactly is the role of hospice or palliative care in treatment when life-prolonging therapy is ongoing?
>> Palliation is much more I guess a healing process. So Rabbi Harold Kushner in his book "Why Bad Things Happen to Good People" wrote, you know, "Curing someone is getting rid of a disease," right? "Healing someone is helping them live well with something that may not ever go away." So I think of palliative medicine as helping someone live as well as they can for as long as they are here on this planet.
Even their last breath that they take is still a life that deserves to be lived as well as it can. >> Maintaining a sense of hope when a child is facing an advanced illness is, I expect, both important for a family, and at times incredibly difficult. How do you help families hold onto hope when it's becoming clear to them that their child is dying? >> Well, I think it's important to help families reframe hope into some sort of realistic framework.
And for me, the same is poet laureate Vaclav Havel, said it best. And I don't remember the quote exactly, but he wrote at one point in his life -- I believe he was actually in prison and it was one of his letters to his wife when he was a political prisoner; he wrote that, "Hope is not a state of the world, it is the state of the mind. And it is not an expectation that things will turn out the way you want them to, it is an understanding that things will make sense regardless of how they turn out." So I will help people by maybe saying, "You know, I am hoping that we are able to get control of your child's disease once again, but I'm really worried that that might not happen this time.
And if it doesn't happen, have you thought about what you might want to do in that situation, or what would worry you most, or how will you react? How are we going to deal with that? What contingency plans will we make in that situation?" >> The distinction between curing and healing is intriguing. Healing the whole patient requires focusing on the many aspects of life besides just a disease or a diagnosis. >> Sure. I mean, it's sort of the foundation of palliative medicine.
It -- you know, I tell people that this discipline really is a team sport and shouldn't be considered anything less than that. And I think Joanne Wolfe, long ago in some of the wonderful research that she's done, showed that that was true. But people suffer from more than just somatic illness. They suffer from the psychological aspects, the spiritual aspects, the social aspects, as well as the somatic aspects of their disease.
And to think that we as allopathic medical professionals can just approach it from our unique physiological understanding of the disease process is pretty narrow-minded. >> Whereas a broader interdisciplinary approach involves input and support from many other disciplines in addition to medicine. >> That includes not only the physician, but also social workers to help with the social aspects of the illness, as well as the family, the psychologist to help with the psychological aspects of the disease; spiritual aspects, so chaplaincy needs to be involved, physical therapists, child life therapists to help with sibling issues, to help the child cope with his or her issues surrounding their own fears and hopes about death, sibling issues, school issues, community issues.
It really does take -- and I know this term has been used way too much, but it really does take a village. People do get the term "multidisciplinary" and "interdisciplinary" confused. Multidisciplinary is wonderful, but those different disciplines, while they're available, have to interact in a very unique, and specific, and functional way. And that's where the interdisciplinary part comes in. So they have to meet, they have to work together to really interact and create a performance, almost like theater, to keep this family whole.
Because you're not just dealing with a dying patient, you're dealing with a whole family that's integrated into a community, and that affects everything from school system, to the church system, to the father and mother's workplace. They are all affected to some extent, and all have to be attended to, to some degree in order for this family to come out the other end as a whole functional unit. So without that piece of it really being taken care of, you're really not providing the optimal kind of care that you should be providing.
>> In the book, there's a quote from the mother of a 13-year-old boy who died from ALL. She says, "I feel like I don't want to leave the hospital. When we walk out the door, it's really going to hit. Here you have all the doctors and nurses and people that are there for you. When we walk out the door tomorrow as a family, then we have to do it as a family, and come together as a family. You're just not sure what to do." Dr. Hurwitz, you wrote that families experience not only the loss of their child, but then on top of that, they experience the very sudden loss of the medical team's support.
>> Yes. And the sad truth is that is that that is the sad truth. It's very hard. At the very least, we should be following up with these families, and that's part of the interdisciplinary approach of palliative care. If you have a functional team, your social worker, your psychologists, your physician, your nurse practitioners, will follow up with these families on intermittent bases, your chaplains, to see how they're doing, to see if they need help, to bring them back into the hospital for at least one visit to discuss and to help them process the child's death, if that's something that they would like to do.
That's routinely done in hospice. But unfortunately, not all children who have terminal illness are in hospice or have access to hospice. And unfortunately and sadly in this country, that's not routinely done. And the resources aren't available and the systems aren't available for adequate reimbursement to provide the infrastructure to let that kind of performance play out in a way that would help these families continue.
>> Is there anything else you would like to share with our listeners about caring for children with cancer at the close of life? >> If there's anything else I'd like to impart, it's just that it has been an incredible honor and a wonderful journey. I am a pediatric oncologist by training, and it took me 30 years of practicing oncology to finally understand and realize that the patients that I followed were actually my teachers all along.
And I had been in this incredibly wonderful classroom all of these years and have ignored incredibly important lessons that I could have been getting for 30 years before I finally woke up. And I'm glad I finally did, and realize that the goal had always been not to cure; because it was my ego that thought that by giving them chemotherapy, I was curing patients. But the reality was two patients with identical diseases treated identically walk into the room at the same time, the one survived and one did not.
And I've made myself feel guilty about the one that didn't survive. And the reality was my job as a healing physician was really to support both of them as best I could, and to bear witness to their suffering, and to walk that journey with them and with their families, and to listen to them. And if I had kept my mouth shut and had been wise and listened as I do now, the learnings that you can glean from that are incredibly rich, and fulfilling, and lasting, and indeed transformative.
>> Dr. Hurwitz, thank you so much for speaking with me today, and sharing your experience and insight with our listeners. More information about this topic is available in "Care at the Close of Life", and on our website, jamaevidence.com. I'm Amy Thompson, and I'll be back with you soon for another episode of "JAMAevidence".
Segment:0 .
>> Welcome to "JAMAevidence", our monthly podcast focused on core issues in evidence-based medicine. I'm Amy Thompson, associate editor at JAMA. Joining me today is Dr. Craig Hurwitz, a pediatric oncologist and the director of the Pediatric Pain and Palliative Care Division at the Dell Children's Medical Center in Austin, Texas. He is also the author of the chapter in "Care at the Close of Life", entitled "Caring for the Child with Cancer at the Close of Life". Dr. Hurwitz, thanks for joining us today.
>> It's my pleasure. >> Dr. Hurwitz, what can you tell us about recent trends in childhood mortality rates? >> Fortunately with many medical and technological advances in medicine, pediatric mortality data from complex and chronic conditions like cystic fibrosis, as well as injuries and sudden infant death syndromes, many of the childhood malignancies, to name a few, have declined substantially in the last decades. In fact, a study published in the early 2000s by Dr. Chris Feudtner, I recall showed that the annual death rate of chronic complex conditions has actually decreased for almost every age group, with the exception of patients in the greater than 20-year-old age range.
I believe he subdivided them into 20- to 24-year-olds, and in that age group, the rate of death actually increased, which suggests, of course, that these younger children now with chronic complex conditions are living actually into their third decade of life. So we may actually be in a state where we need to redefine the whole term of terminal illness. >> So what makes treating children at the close of life particularly complex?
>> Well, the death of a child is, fortunately, a relatively rare event in our country, compared to adult deaths; and it's a very tragic event. But this relative rarity of pediatric terminal illness, compared to adult illnesses compounded, with the variability and age, I mean, children die from infancy up to the age of 18, make it difficult for most medical caregivers to develop an expertise with having the knowledge and the skill set necessary to deliver best practice and best care to all of those children.
Infants generally die from a genetic disorder of inborn errors, of metabolism, of mitochondrial disorders. Older children die predominantly of trauma, of accidental death, of more of malignancies and things like that, and to really have an expertise and the knowledge of all of those different entities is difficult to develop the skills necessary to deliver that kind of care.
On top of that, one also has to have a knowledge and a skill set to deal with the various developmental ages of children as they are dealing with advanced illness, and also with their families. So trying to help these children and their families cope with death becomes a very complicated and complex situation. >> You mentioned treating children across a range of developmental ages. During my own training in pediatrics, I encountered the saying, "Children are not small adults." And for me, a significant part of the truth in that saying is due to that dramatic developmental progression that kids go through as they grow up, and how that affects their care.
>> This is in particular a really important distinction between caring for an adult and caring for a child. When you care for a child with an advanced disease, you really have to be acutely aware of that child's developmental age and how it's affecting his or her understanding of dying. When you look at most of the qualitative data and research, and clinical experience for that matter, you begin to see that most of it really is generated from how children adapt and process the death of a loved one, like a parent, but very little is known about how children, in fact, deal with or think about their own deaths.
So much of what we know has to be extrapolated from the existing data. And when you look at that, it's clear that the developmental stages of children do inform how a dying child might express his or her hopes and his or her fears. So for example, children one to three years of age have a very limited understanding of accidental events and a future pastime. And you may hear them actually say things like, "Mommy, when I die, how long is it going to be before I live again," or, "Daddy, can you still tickle me after I die," because death in these children is viewed as a continuum of life, almost like a different state, like an awake and a sleep cycle.
>> Children who are three to five years old also struggle with that concept of death being irreversible. So how does their understanding of death differ from that of younger children? >> So a child of that age has a very limited understanding because of their egocentricity, and believes perhaps that he or she somehow caused the death, or views it as a punishment. In fact, death is often viewed as an external force that is occurring, and death is personified; so the bogeyman might be coming after you.
>> There's a big shift after that age as five- to ten-year-olds are really beginning to understand that death is permanent. >> These children do understand that death means that your heart stops, that your blood no longer circulates through your body, that you stop breathing. These children may not accept that death can happen to them, but may understand that death can happen to people that they actually love; and they know that those people will at some point begin to die.
It's important in this age group to be very honest and to provide specific details if they're asked for. These children particularly need help and support, and need permission and encouragement to participate in decision-making in a way that makes them feel comforted and not to feel afraid. And then you have young adolescents who really begin to think in an abstract manner, and in a mature manner, and understand that death is final and is universal.
But they also will begin to see death as a result of punishment or poor behavior, perhaps. You may hear them say, "I'm afraid if I die, my mother is not going to be able to get through life." And they will begin to protect their loved ones. And so it's important to reinforce their self-esteem and their sense of self-worth. >> In the book, you note that older adolescents continue to develop a more adult understanding of death, and that particularly in this age group, a child might think of death as an enemy to be fought against.
>> Their thinking is much more abstract, and you can interact with them in a much more of a mature form and admit and speak with them in an adult language about how this is unfair and how it's awful, and that they're doing an incredible job through it, and ask them the open-ended questions to try to elicit more about what their hopes are, their fears are, their worries are, and help them deal with it in that way. >> What's important to you during that difficult initial conversation?
>> When I first meet the child, they're usually scared; because they know that something's not right. They're in the hospital, and the hospital is not a fun place to be. So when I first meet them, really all I want to do is listen to them, and find out who they are and where they're coming from. >> I imagine most parents want every available option to be explored in their hopes for a cure. So what happens when therapies haven't been successful, and curing a child's disease, in your opinion, is no longer a realistic goal, but a child's parent still wants to pursue every possible treatment?
>> I never try to convince anybody of anything. And I think most families are hoping for that miracle, and they're also hoping and wanting, and very much desirous of comfort care. So they want these concurrent goals that on the surface seem very far apart. But the Affordable Care Act has actually recognized that that's where the vast majority of parents and families are with children, and that they deserve that.
So in this country, if you have Medicaid and you are eligible for hospice, you can get both cured as in life-prolonging therapy, and be eligible and receive hospice at the same time, right? You can't do that if you're an adult. If you elect to have hospice care, you must forego life-prolonging therapy. As a child, you can have both. >> That's a pretty enlightened approach. What exactly is the role of hospice or palliative care in treatment when life-prolonging therapy is ongoing?
>> Palliation is much more I guess a healing process. So Rabbi Harold Kushner in his book "Why Bad Things Happen to Good People" wrote, you know, "Curing someone is getting rid of a disease," right? "Healing someone is helping them live well with something that may not ever go away." So I think of palliative medicine as helping someone live as well as they can for as long as they are here on this planet.
Even their last breath that they take is still a life that deserves to be lived as well as it can. >> Maintaining a sense of hope when a child is facing an advanced illness is, I expect, both important for a family, and at times incredibly difficult. How do you help families hold onto hope when it's becoming clear to them that their child is dying? >> Well, I think it's important to help families reframe hope into some sort of realistic framework.
And for me, the same is poet laureate Vaclav Havel, said it best. And I don't remember the quote exactly, but he wrote at one point in his life -- I believe he was actually in prison and it was one of his letters to his wife when he was a political prisoner; he wrote that, "Hope is not a state of the world, it is the state of the mind. And it is not an expectation that things will turn out the way you want them to, it is an understanding that things will make sense regardless of how they turn out." So I will help people by maybe saying, "You know, I am hoping that we are able to get control of your child's disease once again, but I'm really worried that that might not happen this time.
And if it doesn't happen, have you thought about what you might want to do in that situation, or what would worry you most, or how will you react? How are we going to deal with that? What contingency plans will we make in that situation?" >> The distinction between curing and healing is intriguing. Healing the whole patient requires focusing on the many aspects of life besides just a disease or a diagnosis. >> Sure. I mean, it's sort of the foundation of palliative medicine.
It -- you know, I tell people that this discipline really is a team sport and shouldn't be considered anything less than that. And I think Joanne Wolfe, long ago in some of the wonderful research that she's done, showed that that was true. But people suffer from more than just somatic illness. They suffer from the psychological aspects, the spiritual aspects, the social aspects, as well as the somatic aspects of their disease.
And to think that we as allopathic medical professionals can just approach it from our unique physiological understanding of the disease process is pretty narrow-minded. >> Whereas a broader interdisciplinary approach involves input and support from many other disciplines in addition to medicine. >> That includes not only the physician, but also social workers to help with the social aspects of the illness, as well as the family, the psychologist to help with the psychological aspects of the disease; spiritual aspects, so chaplaincy needs to be involved, physical therapists, child life therapists to help with sibling issues, to help the child cope with his or her issues surrounding their own fears and hopes about death, sibling issues, school issues, community issues.
It really does take -- and I know this term has been used way too much, but it really does take a village. People do get the term "multidisciplinary" and "interdisciplinary" confused. Multidisciplinary is wonderful, but those different disciplines, while they're available, have to interact in a very unique, and specific, and functional way. And that's where the interdisciplinary part comes in. So they have to meet, they have to work together to really interact and create a performance, almost like theater, to keep this family whole.
Because you're not just dealing with a dying patient, you're dealing with a whole family that's integrated into a community, and that affects everything from school system, to the church system, to the father and mother's workplace. They are all affected to some extent, and all have to be attended to, to some degree in order for this family to come out the other end as a whole functional unit. So without that piece of it really being taken care of, you're really not providing the optimal kind of care that you should be providing.
>> In the book, there's a quote from the mother of a 13-year-old boy who died from ALL. She says, "I feel like I don't want to leave the hospital. When we walk out the door, it's really going to hit. Here you have all the doctors and nurses and people that are there for you. When we walk out the door tomorrow as a family, then we have to do it as a family, and come together as a family. You're just not sure what to do." Dr. Hurwitz, you wrote that families experience not only the loss of their child, but then on top of that, they experience the very sudden loss of the medical team's support.
>> Yes. And the sad truth is that is that that is the sad truth. It's very hard. At the very least, we should be following up with these families, and that's part of the interdisciplinary approach of palliative care. If you have a functional team, your social worker, your psychologists, your physician, your nurse practitioners, will follow up with these families on intermittent bases, your chaplains, to see how they're doing, to see if they need help, to bring them back into the hospital for at least one visit to discuss and to help them process the child's death, if that's something that they would like to do.
That's routinely done in hospice. But unfortunately, not all children who have terminal illness are in hospice or have access to hospice. And unfortunately and sadly in this country, that's not routinely done. And the resources aren't available and the systems aren't available for adequate reimbursement to provide the infrastructure to let that kind of performance play out in a way that would help these families continue.
>> Is there anything else you would like to share with our listeners about caring for children with cancer at the close of life? >> If there's anything else I'd like to impart, it's just that it has been an incredible honor and a wonderful journey. I am a pediatric oncologist by training, and it took me 30 years of practicing oncology to finally understand and realize that the patients that I followed were actually my teachers all along.
And I had been in this incredibly wonderful classroom all of these years and have ignored incredibly important lessons that I could have been getting for 30 years before I finally woke up. And I'm glad I finally did, and realize that the goal had always been not to cure; because it was my ego that thought that by giving them chemotherapy, I was curing patients. But the reality was two patients with identical diseases treated identically walk into the room at the same time, the one survived and one did not.
And I've made myself feel guilty about the one that didn't survive. And the reality was my job as a healing physician was really to support both of them as best I could, and to bear witness to their suffering, and to walk that journey with them and with their families, and to listen to them. And if I had kept my mouth shut and had been wise and listened as I do now, the learnings that you can glean from that are incredibly rich, and fulfilling, and lasting, and indeed transformative.
>> Dr. Hurwitz, thank you so much for speaking with me today, and sharing your experience and insight with our listeners. More information about this topic is available in "Care at the Close of Life", and on our website, jamaevidence.com. I'm Amy Thompson, and I'll be back with you soon for another episode of "JAMAevidence".
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This describes many other keyboard shortcuts for media controls.
Exit Clip Mode
The video is currently set-up to show just a clip from 0:00 to video end. You have requested to see a portion of the media outside of the clip.
Click OK to switch to the full media or click if you would like to stay inside the clip. You can always go back to the clip with Tools and Clip Mode