In pediatrics care most often supports life-sustaining treatment to promote the best interests of the child. But in some circumstances (after weighing the balance of benefits and burdens of a range of treatment choices) continuing life-sustaining treatment is decided to no longer be in the child’s best interests. Collaboration and clear communication are essential in these difficult discussions.
Join Bioethicist and Neonatologist Brian Carter, MD at Children’s Mercy Kansas City, as he provides insights on his recommendations and contributions to the American Academy of Pediatrics’ newly updated policy statement on how to promote the best possible end-of-life care for children.
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The Decision to Withhold Life-Sustaining Medical Treatment for Children
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Learn more about Brian Carter, MD
Brian Carter, MD
Brian Carter, MD is a neonatologist and pediatric bioethicist at Children’s Mercy Kansas City. He received his medical degree from the University of Tennessee College of Medicine in Memphis; completed a residency in pediatrics and Fitzsimons Army Medical Center in Colorado and a fellowship in neonatal and perinatal medicine at the University of Colorado in Denver. He is a Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine.Learn more about Brian Carter, MD
Transcription:
The Decision to Withhold Life-Sustaining Medical Treatment for Children
Dr. Michael Smith (Host): So, our topic today is the decision to withhold life-sustaining medical treatment for children. My guest is Dr. Brian Carter. Dr. Carter is a neonatologist and a pediatric bioethicist at Children’s Mercy, Kansas City. Dr. Carter, welcome to the show.
Dr. Brian Carter, MD (Guest): Well, good morning.
Dr. Smith: Let's go ahead and start off. I’d like for you to kind of frame this discussion for us. So, I want to just kind of ask you, why is this topic important to you?
Dr. Carter: Well, first of all as a neonatologist working in an ICU and a hospital-based physician, we deal with many conditions in childhood for which, despite our best efforts, medicine reaches its limit of capability to perhaps effect a cure or resolve overwhelming illness in children, and in those situations, it’s necessary to consider what we are doing and whether it is working to the benefit of the child, or if it’s prolonging agony, perhaps even prolonging a dying process, and what would be the kind, compassionate, and humane action that physicians and other team members should take towards discussing and affecting decisions towards the withdrawal of life-sustaining medical treatment. This isn’t a frequent event, if you will, but it’s not so infrequent as to not require some attention and standardization of approach.
Dr. Smith: Is that maybe one of the problems right now is that there really isn’t a standardized way to approach this decision-making process? Is that one of the issues we need to address?
Dr. Carter: Well, it is perhaps a piece of that, Dr. Mike. It’s also—the matter pertains to the adult population so it’s not unique to pediatrics. However, it has been stated in previous venues by numerous people, it’s inappropriate or seemingly out of season; it’s untimely anytime a child dies, and so the emotions, the difficulties, the communication, the words chosen, and the process towards decision making in a compassionate fashion becomes doubly concerning when dealing with children compared to adults.
Dr. Smith: Yeah.
Dr. Carter: There have been standards set. There have been recommendations and in just this past year, 2017, the American Academy of Pediatrics revisited withdrawal of life-sustaining medical treatment statement that was originally published in 1994.
Dr. Smith: So, let’s talk a little bit about that decision-making process, then. What is actually involved in this process and even like who should be providing the input and how many people should be involved in this process?
Dr. Carter: Well, it’s something we need to be careful of so that it’s not a large number of healthcare professionals sitting in a room with a parent or a couple of parents in what appears, or can be sensed, as an overwhelming “us against them” setting. It needs to be done sensitively, but also with regard to appropriate personnel. Typically, the responsibility falls on the attending physician, but he or she may have an accompaniment, a trainee, a resident or a fellow physician. Perhaps, a consulting physician if this is a primary intensivist. Who, as the attending physician, she may ask the child neurologist to be present or perhaps a cardiothoracic surgeon or other subspecialist who’s been involved in the case and the care of the child to convey with singular voice the concerns and the need to address this most grievous of decisions. In addition to parents and the attending physician, or as I noted a consultant, there may well be a primary bedside nurse. There may be a social worker or a chaplain. There oftentimes are extended family members if the parents so choose or perhaps even clergy, whether that’s community clergy or a hospital chaplain is noted. So, a conversation should involve these interested parties, but the principal decision-making process should be shared between the attending physician and the parents.
Dr. Smith: So, when you look at the medical advancements we’ve made, you know, with diagnosis and treatment, how is that played into making that decision to withhold life-sustaining treatment?
Dr. Carter: Well, you ask about withholding life-sustaining treatment and that may clearly be distinct from initiating life-sustaining treatment and then subsequently withdrawing it. When we choose to withhold, it is because there’s no perceived benefit or a life-sustaining treatment that perhaps parents have read about or seen on the internet or spoken with other friends and family about is visited as a possibility, but then determined not to be more beneficial, then, in fact, burdensome or frankly, harmful. Indeed, there are some instances in which someone might make a suggestion about, well, why don’t we try this, whether it’s assisted ventilation, dialysis, extracorporeal membrane oxygenation or ECMO, or other significant technologic advances that have come along in the last 20 or 30 years, and the reason why it may not be tried is because a, it would not be indicated. It’s not been proven to be beneficial in such instances, or b, would be fraught with more complication than likely benefit, and that oftentimes is a clinical decision, but it’s also a decision that’s informed by what the family perceives as an acceptable burden of care or what risk they’re willing to take with their child’s health condition versus accepting that medicine has reached its limit, and they don’t want to protract a dying process or try something else because the condition the child is in or that he or she has endured perhaps for days, weeks or months. Withdrawing such technologies, once they have been offered, is a similar discussion, but what’s usually afforded by a therapeutic treatment trial and initiating such life-sustaining therapies is an attempt to determine whether or not it can meet the goals for which it was started. And if it cannot, then the same conversation that might have preceded withholding is now held with a view towards the last few days, weeks, or months in which we see that the treatment trial has not met the goals or has been confronted with complications and then clinicians and families will make a decision to withdraw.
Dr. Smith: Right. So, Dr. Carter, how do you handle the difficult situation where maybe the family doesn’t agree with foregoing life-sustaining care?
Dr. Carter: Well, it is a difficult situation and causes tension, not only within a family, but also, across healthcare teams, and there’s oftentimes engagement of specialists in ethics or palliative medicine or perhaps behavioral health, social workers, clergy, chaplaincy, psychologists to better understand where the disruption lies; also, to help in a negotiative process if there can be a singular voice that is ultimately attained, but that’s not always possible despite our best efforts. And, generally speaking, in America, we do not practice unilateral decisions whereby the healthcare team decides to withhold or withdraw care without parental permission. So, these issues are fleshed out. They’re explored by these consultant as noted, and the value of ongoing communication, time, and supportive personnel oftentimes then leads to an agreed-upon decision.
Dr. Smith: So, in summary, Dr. Carter, what would you like people to know about the decision to withhold life-sustaining medical treatment?
Dr. Carter: Perhaps the most important thing to understand is such a decision is never taken lightly. By and large, pediatricians of all specialties and general pediatricians in the community practice with a goal of promoting a child’s health, helping parents attain care for their child that seeks the child’s best interest, and we generally are able to do that. The presumption of benefit underlies much of our care, and the benefit has been towards life-sustaining treatments, but on occasion, we are not able to attain those goals, and we have to wrestle with difficult decisions. When those decisions have to be made, we can turn to publications like the American Academy of Pediatrics Guidance on Forgoing Life-Sustaining Medical Treatment. We can discuss these issues amongst clinicians with ethicists, with palliative care consultants, and openly with families taking time to appropriately address what is truly the best decision possible in a grievous situation.
Dr. Smith: Dr. Carter, I want to thank you for the work that you’re doing at Children’s Mercy, and also thank you for coming on the show today. You’re listening to Transformational Pediatrics with Children’s Mercy, Kansas City. For more information, you go to childrensmercy.org. That’s childrensmercy.org. I’m Dr. Mike Smith. Thanks for listening.
The Decision to Withhold Life-Sustaining Medical Treatment for Children
Dr. Michael Smith (Host): So, our topic today is the decision to withhold life-sustaining medical treatment for children. My guest is Dr. Brian Carter. Dr. Carter is a neonatologist and a pediatric bioethicist at Children’s Mercy, Kansas City. Dr. Carter, welcome to the show.
Dr. Brian Carter, MD (Guest): Well, good morning.
Dr. Smith: Let's go ahead and start off. I’d like for you to kind of frame this discussion for us. So, I want to just kind of ask you, why is this topic important to you?
Dr. Carter: Well, first of all as a neonatologist working in an ICU and a hospital-based physician, we deal with many conditions in childhood for which, despite our best efforts, medicine reaches its limit of capability to perhaps effect a cure or resolve overwhelming illness in children, and in those situations, it’s necessary to consider what we are doing and whether it is working to the benefit of the child, or if it’s prolonging agony, perhaps even prolonging a dying process, and what would be the kind, compassionate, and humane action that physicians and other team members should take towards discussing and affecting decisions towards the withdrawal of life-sustaining medical treatment. This isn’t a frequent event, if you will, but it’s not so infrequent as to not require some attention and standardization of approach.
Dr. Smith: Is that maybe one of the problems right now is that there really isn’t a standardized way to approach this decision-making process? Is that one of the issues we need to address?
Dr. Carter: Well, it is perhaps a piece of that, Dr. Mike. It’s also—the matter pertains to the adult population so it’s not unique to pediatrics. However, it has been stated in previous venues by numerous people, it’s inappropriate or seemingly out of season; it’s untimely anytime a child dies, and so the emotions, the difficulties, the communication, the words chosen, and the process towards decision making in a compassionate fashion becomes doubly concerning when dealing with children compared to adults.
Dr. Smith: Yeah.
Dr. Carter: There have been standards set. There have been recommendations and in just this past year, 2017, the American Academy of Pediatrics revisited withdrawal of life-sustaining medical treatment statement that was originally published in 1994.
Dr. Smith: So, let’s talk a little bit about that decision-making process, then. What is actually involved in this process and even like who should be providing the input and how many people should be involved in this process?
Dr. Carter: Well, it’s something we need to be careful of so that it’s not a large number of healthcare professionals sitting in a room with a parent or a couple of parents in what appears, or can be sensed, as an overwhelming “us against them” setting. It needs to be done sensitively, but also with regard to appropriate personnel. Typically, the responsibility falls on the attending physician, but he or she may have an accompaniment, a trainee, a resident or a fellow physician. Perhaps, a consulting physician if this is a primary intensivist. Who, as the attending physician, she may ask the child neurologist to be present or perhaps a cardiothoracic surgeon or other subspecialist who’s been involved in the case and the care of the child to convey with singular voice the concerns and the need to address this most grievous of decisions. In addition to parents and the attending physician, or as I noted a consultant, there may well be a primary bedside nurse. There may be a social worker or a chaplain. There oftentimes are extended family members if the parents so choose or perhaps even clergy, whether that’s community clergy or a hospital chaplain is noted. So, a conversation should involve these interested parties, but the principal decision-making process should be shared between the attending physician and the parents.
Dr. Smith: So, when you look at the medical advancements we’ve made, you know, with diagnosis and treatment, how is that played into making that decision to withhold life-sustaining treatment?
Dr. Carter: Well, you ask about withholding life-sustaining treatment and that may clearly be distinct from initiating life-sustaining treatment and then subsequently withdrawing it. When we choose to withhold, it is because there’s no perceived benefit or a life-sustaining treatment that perhaps parents have read about or seen on the internet or spoken with other friends and family about is visited as a possibility, but then determined not to be more beneficial, then, in fact, burdensome or frankly, harmful. Indeed, there are some instances in which someone might make a suggestion about, well, why don’t we try this, whether it’s assisted ventilation, dialysis, extracorporeal membrane oxygenation or ECMO, or other significant technologic advances that have come along in the last 20 or 30 years, and the reason why it may not be tried is because a, it would not be indicated. It’s not been proven to be beneficial in such instances, or b, would be fraught with more complication than likely benefit, and that oftentimes is a clinical decision, but it’s also a decision that’s informed by what the family perceives as an acceptable burden of care or what risk they’re willing to take with their child’s health condition versus accepting that medicine has reached its limit, and they don’t want to protract a dying process or try something else because the condition the child is in or that he or she has endured perhaps for days, weeks or months. Withdrawing such technologies, once they have been offered, is a similar discussion, but what’s usually afforded by a therapeutic treatment trial and initiating such life-sustaining therapies is an attempt to determine whether or not it can meet the goals for which it was started. And if it cannot, then the same conversation that might have preceded withholding is now held with a view towards the last few days, weeks, or months in which we see that the treatment trial has not met the goals or has been confronted with complications and then clinicians and families will make a decision to withdraw.
Dr. Smith: Right. So, Dr. Carter, how do you handle the difficult situation where maybe the family doesn’t agree with foregoing life-sustaining care?
Dr. Carter: Well, it is a difficult situation and causes tension, not only within a family, but also, across healthcare teams, and there’s oftentimes engagement of specialists in ethics or palliative medicine or perhaps behavioral health, social workers, clergy, chaplaincy, psychologists to better understand where the disruption lies; also, to help in a negotiative process if there can be a singular voice that is ultimately attained, but that’s not always possible despite our best efforts. And, generally speaking, in America, we do not practice unilateral decisions whereby the healthcare team decides to withhold or withdraw care without parental permission. So, these issues are fleshed out. They’re explored by these consultant as noted, and the value of ongoing communication, time, and supportive personnel oftentimes then leads to an agreed-upon decision.
Dr. Smith: So, in summary, Dr. Carter, what would you like people to know about the decision to withhold life-sustaining medical treatment?
Dr. Carter: Perhaps the most important thing to understand is such a decision is never taken lightly. By and large, pediatricians of all specialties and general pediatricians in the community practice with a goal of promoting a child’s health, helping parents attain care for their child that seeks the child’s best interest, and we generally are able to do that. The presumption of benefit underlies much of our care, and the benefit has been towards life-sustaining treatments, but on occasion, we are not able to attain those goals, and we have to wrestle with difficult decisions. When those decisions have to be made, we can turn to publications like the American Academy of Pediatrics Guidance on Forgoing Life-Sustaining Medical Treatment. We can discuss these issues amongst clinicians with ethicists, with palliative care consultants, and openly with families taking time to appropriately address what is truly the best decision possible in a grievous situation.
Dr. Smith: Dr. Carter, I want to thank you for the work that you’re doing at Children’s Mercy, and also thank you for coming on the show today. You’re listening to Transformational Pediatrics with Children’s Mercy, Kansas City. For more information, you go to childrensmercy.org. That’s childrensmercy.org. I’m Dr. Mike Smith. Thanks for listening.