January 13, 2023
As all pediatricians know, children are not just “little adults” and this is especially true in the field of ethics. In matters from consenting to surgery to deciding end-of-life wishes, adults are assumed to have decisional capacity until proven otherwise. Adults have the benefit of years of developmental maturation and experiences that have shaped a unique set of preferences and underlying values. Children, on the other hand, pose a more complex picture. Given their wide range of cognitive abilities (from neonates in the NICU to frontal lobe deficient teenagers), decisional incapacity is the default and deciding “best interest” is often in the hands of mom and dad. This presents obvious conflicts in many situations: from refusing vaccines to reckoning with an adolescent who has decided they’re done with chemotherapy and its side effects. Join this conversation with our Kid Expert Ian Wolfe, PhD RN as we explore some tough cases in the world of pediatric ethics.
Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to The Kid Experts, where the complex is our every day. Each week, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge and perhaps change how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. On today’s episode of Talking Pediatrics, we have another crack the case with Dr. Bryan Fate. Taking a slightly different approach in today’s episode, Dr. Fate interviews our kid expert in clinical ethicist, Dr. Ian Wolfe at Children’s Minnesota to describe some of the underlying ethical principles that we can use when making difficult decisions when it comes to kids and their medical health.
Dr. Bryan Fate: Welcome to Crack the Case where we dive into real cases seen at our Minneapolis continuity clinic to highlight medical decision-making, approaches to general pediatrics topics and life in primary care. We’ll also incorporate music written by myself and friends at the end of every episode to highlight teaching points and hopefully engage the emotive side of your brain. I’m Dr. Bryan Fate, a general pediatrician at our Minneapolis clinic. And with me today is Dr. Ian Wolfe, senior clinical ethicist for Children’s Minnesota. Dr. Wolfe earned his PhD in nursing with a focus in bioethics, his MA in bioethics with a minor in public health at the U of M and then completed post doctoral fellowship in pediatric bioethics at Children’s Mercy in Kansas City. Welcome Dr. Wolfe. We’re so happy to have you here.
Dr. Ian Wolfe: Thanks for having me.
Dr. Bryan Fate: Absolutely. So icebreaker question today is what initially drew you to ethics?
Dr. Ian Wolfe: I was initially drawn to ethics based actually on my experiences at the bedside, seeing how interactions unfolded, good or bad, and how so many external factors influenced how those interactions unfolded.
Dr. Bryan Fate: Excellent. And Dr. Wolfe are ethicists by default ethical people?
Dr. Ian Wolfe: Not necessarily. We are good at exploring and letting you know and pointing out all the ethical considerations and factors, but that doesn’t inherently make us make the best choices as we are people.
Dr. Bryan Fate: So to introduce the cases today, as all pediatricians know, children are not just little adults, and this is especially true in the field of ethics. It matters from consenting to surgery to deciding end of life wishes. Adults are assumed to have decisional capacity until proven otherwise. This is given years of developmental maturation and experiences that have shaped a unique set of preferences and underlying values. Children, on the other hand, pose a more complex picture given their wide range of cognitive abilities from neonates in the NICU to frontal lobe deficient teenagers, decisional incapacity is the default and deciding best interest often in the hands of mom and dad. This presents obvious conflicts in many situations from refusing vaccines and blood transfusions to reckoning with an adolescent who has decided that they’re done with chemotherapy and its side effects. In today’s cases, we aim to outline underlying ethical principles that pediatricians can use to navigate tough ethical decisions of their own. So let’s start the case.
So as we alluded to in the introduction, considering decisional capacity and respect for autonomy with children is unique when compared. To adults to think of some of the principles, let’s take a pet peeve case of mine seen somewhat frequently in my clinic. Kelvin is a rambunctious four-year-old due for his DTaP polio and MMR varicella boosters before kindergarten. You update his parents on the immunizations and gingerly pausing an episode of PAW Patrol, they look deeply into his eyes and ask, now, Kelvin, do you want a shot? A resolute no is assumed from the screaming and crying that ensues and they tell you that, shucks, I guess we’ll have to wait. So for you Dr. Wolfe, what role are capacity and autonomy playing out here? And maybe we can talk a little bit about how that changes as the child grows.
Dr. Ian Wolfe: Capacity is essentially understood to be the ability to understand information, weigh risks, benefits, consequences, and decisions that remain constant over time. We would presume children have burgeoning autonomy, but under seven are presumed to not have capacity, and in Kelvin’s case certainly does not have the capacity to weigh the consequences, the risks, the benefits of vaccination.
Dr. Bryan Fate: So because he does not have the capacity to make that decision, then the parents get to override his autonomy, AKA, I don’t want a shot, and decide what’s in his best interest for him.
Dr. Ian Wolfe: Correct.
Dr. Bryan Fate: And my metaphor for this, I ask, would you let your kids pick out your family’s groceries at the grocery store? And the answer is no, because you come back with a cart full of Gushers and Hawaiian Punch and eight pounds of Skittles. And sometimes we have to make decisions for children and that is in their best interest. I think a difficult thing is that best interest can be a little bit of a foggy term.
Dr. Ian Wolfe: Correct. Yeah. Best interest is, in ethics, considered it’s a best interest standard. It’s considered more of a guiding principle and parents are often making best interests decisions based on what’s best for the whole family, not necessarily the individual child. And so there is a context dependent nature of how we consider what is best.
Dr. Bryan Fate: So in the realm of best interest, when do we think about when it’s appropriate to override that parental authority and that usually have to get the state involved in certain cases.
Dr. Ian Wolfe: So there’s a zone of parental discretion we consider where we’re all guided by best interest and I think can generally assume that parents want what’s best for their child, the clinicians also want what’s best for the child, and sometimes those might disagree and parents have a wide latitude to raise and make decisions for their children as they see fit, even if some other people think those are suboptimal. Where parents are limited is by the harm threshold, which is the clinician’s obligations to report to the state based on the state’s obligations and interest in life.
Dr. Bryan Fate: When we’re encroaching the realm of harm is when we start to think about that.
Dr. Ian Wolfe: And not just harm but significant and imminent harm. And so these are a lot of concepts we have to define in the moment and rely on clinical decisions as well and clinical definitions. But you also must consider the harm of overriding parental authority as well. That certainly comes with its own set of harms. You must consider the harm of reporting overriding parental authority in the calculus of harm.
Dr. Bryan Fate: So things like losing trust in the medical system, the bonds that are potentially frayed in the family unit as a result, the legal process, the relationships between the kids and the parents. So that’s all part of that harm from overriding the harm.
Dr. Ian Wolfe: And I think often it’s a very distressing situation we get in these where we think the parents making a decision that’s not in the child’s best interest. And so we take that concept alone and report. It’s led I think over the century to a lot of healthcare being untrustworthy and acting untrustworthy because they weren’t considering the harms of what they’re doing when it’s used inappropriately. Certainly reporting to the state is lifesaving for many children and families when it’s used appropriately.
Dr. Bryan Fate: And what you’re saying is that that can become paternalistic and if it’s overused without a complex consideration of the consequences of that action?
Dr. Ian Wolfe: Exactly. We need to consider what the harms of what the parent’s not agreeing to provide and the harms of overriding and really calculate and consider whether that, the harm from overriding parental authority balances out with the benefits of either not receiving the treatment or receiving the treatment depending on what they’re refusing.
Dr. Bryan Fate: So let’s go into another case just to continue to highlight some of these principles. So Corey Cougar is a 17 year old with a history of clotting disorder that has required admission for IV anticoagulation due to deep venous thrombosis. Corey is a hockey star on the Como Park High school team where I went, and they are approaching their major Rice Street Cup hockey tournament. Given that he’s on chronic anticoagulation therapy and hockey falls under a contact sport, he has been advised against playing hockey given increased bleeding risk. So Corey has asked for alteration in his anticoagulation regimen to allow for INR to decrease in order to more safely play out the rest of the season. And this again is a slightly different, he’s 17, capacity is a little bit different in this case than the four year old. So this is a real case that you had to dissect Dr. Wolfe. So maybe you can tell us a little bit about the principles at play and what your thought process was.
Dr. Ian Wolfe: The Corey here is presumed to have capacity, he’s on the cusp of legal competency and once he turned 18 would be free to refuse any treatment whether it’s lifesaving or not. We might think it’s in Corey’s best interest to not play hockey and alter his anticoagulation regimen. He might disagree, it’d be interesting to know what his parents think and whether the school would allow that. And at 17 we want him to have more input over his health decisions and we also require his participation in those unlike a two-year-old, we would think sneaking his medications in food or holding him down to take them a violation of his trust and bodily integrity despite the harms from not taking his medication.
Dr. Bryan Fate: So not only does he have more leverage with capacity, but as a strong 17-year-old teenager, he also has a physical-.
Dr. Ian Wolfe: Sure.
Dr. Bryan Fate: … And cognitive different strategies that the younger kids might not have to not follow through with what you would want him, just trying to give a teenager a vaccine that they didn’t want to have. It’s not going to end well. So that’s also at play is the harm of the resistance. And what was your discussion with the family like Dr. Wolfe, and what ended up playing out?
Dr. Ian Wolfe: Well, there’s a lot of other nuanced things going on here and my role as the clinical ethicist was guiding the clinicians and the family on what might be ethically appropriate. And here clinicians have no obligation to engage in inappropriate treatment regimens. So I would say to the clinician, well, that’s non-standard and it’s potentially harmful then you have no obligation to engage in it. The harms of enforcing the treatment regimen for Corey are different than say a two-year-old where we might think the harms are minimal of holding down a two-year-old for a vaccination. The harms of holding a 17-year-old down, the trauma that that might induce would be much more harmful than possibly the harm of him not taking it, considering his level of capacity and his autonomy over his body.
So what I had advised is for the clinicians to not engage with that if they didn’t feel it was appropriate, it didn’t meet the level of harm threshold to where we potentially needed to report. Although that should be further discussion depending whether he did go play hockey or not, that responsibility would ultimately fall on parents and the school.
Dr. Bryan Fate: So let’s go to the next case. We have a younger child with sickle cell disease whose parents have adamantly declined routine vaccinations and penicillin prophylaxis citing that this therapy goes against their faith. Given well-studied increased risks of serious bacterial infection in the setting of functional asplenia with sickle cell disease, the care team feels uncomfortable with not providing these preventative therapies. So can you tell us, Dr. Wolfe a little bit about what principles are at play here and then what your thought process was during this consult?
Dr. Ian Wolfe: Sure. And this is a very challenging case and they often are, and I always try to start by centering these consults with two assumptions that no one is generally walking around doing unethical things on purpose, and parents generally want what’s best for their children. The term standard of care is an important one though I often try not to use it as it carries little relevance and ethical analysis and can really often cloud us from trying to understand the parent’s reasons because standard of care doesn’t necessarily mean mandatory. Rather the proportion of benefits to burden beneficent and non maleficence do most of the work in pediatrics and particularly in this case I’m sure the parent by refusing to engage in this and based on their beliefs think that is in the best interest for their child. So we really need to think then from a clinical perspective, where is the level of harm there for the child by not taking the vaccinations or the penicillin, and does it meet our harm threshold? But what are the other harms of going that route?
Dr. Bryan Fate: I do think it’s with vaccines and things that you’re preventing, especially a tangible outcome when you’re preventing something that never happened than when you’re fixing something that’s already broken, which is why it can be so hard to convince some families about the benefits of vaccines when you don’t actually see your child recover from something. You’re seeing something that never happened, which is, it’s tough. And it also I think plays a little bit differently into the principle of harm too.
Dr. Ian Wolfe: Well the level of certainty is important in analyzing benefit and burden and risks and harms, et cetera. The reason level of certainty is important because that gets us to that imminent harm. Certainly we would not allow parents to refuse to give insulin to their child with diabetes because that has a certain level of harm that will come from this. But with prevention, where is the level of certainty, we don’t really know. And so that might change the calculus of benefit to burden, or at least change the calculus in how we’re viewing that treatment being harmful where we would need to intervene to save the life of the child.
Dr. Bryan Fate: So Dr. Wolfe, how should the clinicians proceed in these cases?
Dr. Ian Wolfe: So good question. Just want to always validate how difficult these cases are for clinicians when they feel something so strongly that this could be prevented. And certainly if this child needed repeated hospitalizations for preventable infections, that might change the calculus, but at this point, building trust should be the ethical principle they should work towards and being trustworthy with the family, because greater benefits will come to this child through long-term relationships with this mother. We have spent a century being untrustworthy and then proving those beliefs right. And so in these cases, although it’s hard for clinicians to do this, careful relationship building could be a larger benefit in the long-term depending on if he continues to have repeated infections and hospitalizations.
Dr. Bryan Fate: If this family based on their experience just decides to not engage with health care at all, period, that could be an outcome when you lose that trust and then that’s has a huge consequence for this child.
Dr. Ian Wolfe: Similar to how we think about vaccinations when parents refuse them, often it’s better to continue a relationship of trust with that family than to say, we’re not going to treat you at all if you don’t get vaccinations.
Dr. Bryan Fate: That also just brings up the idea that when you are deciding to override a parent and get the state involved, ideally that is just the last step that-.
Dr. Ian Wolfe: Absolutely.
Dr. Bryan Fate: … that is possible and that there are trying to navigate every venue that you have to communicate, to sit down, to listen, to involve your team, Dr. Wolfe, and make sure that the family feels heard, that you are not the one doing most of the talking.
Dr. Ian Wolfe: Correct. We have the greater dynamic of power in the relationship and with that, of course, comes responsibility. We have the burden to build trust, and again, starting with the assumption that generally speaking, the parents that we meet love their children and want what’s best for them. And so the question I start with is how can we partner with this family going forward for the best and for this child.
Dr. Bryan Fate: One more case for you, Dr. Wolfe, and this is one that’s not involving patients, so this is one that’s actually I’ve struggled with and involves being the doctor for your friend, and that sounds like like a hunky dory fun. Hey, I get to hang out with my friend at clinic, and people will ask you too because they have a relationship with you and there’s trust already in certain cases. It’s a more complex issue than I realize sometimes in terms of having access to both parents medical records and some sensitive information that usually a lot of those families, they don’t know that the doctor has access to those when you’re seeing the newborn for the first time. They have access to you that other families don’t have via text call, maybe proximity in the neighborhood. You have to think about how much time you’re spending and attention if this is your friend’s child versus someone else’s child. There are also just more gray boundaries in place.
And I think it’s appropriate in certain cases, if you can set those boundaries, if you can be very clear about what those expectations are, I’m going to have access to these records. This makes our friendship a little bit more complex. And I don’t think it is a blanket wrong idea, for me it’s, I have a policy where I don’t, but I do think if those boundaries are set, then it can be something that is appropriate but definitely deserve some thought. So I just wanted to bring up that concept that’s come up organically as I practiced for longer and just see what your thoughts were on that, Dr. Wolfe.
Dr. Ian Wolfe: And it speaks a little bit to virtue ethics and meaning sort of what kind of clinician and physician in your case we want to be. And there really does come down to balancing beneficence and non maleficence. You’re balancing patient’s access. So in some instances if you’re the only quintessential town family doctor, there is no other access. And so you, by default, have to be the clinician for everybody. And so I would say, well, what kind of-.
Dr. Bryan Fate: And you have to have friends-.
Dr. Ian Wolfe: Yes.
Dr. Bryan Fate: … in your town. You can’t just-.
Dr. Ian Wolfe: You have to have friends in your town.
Dr. Bryan Fate: … a caveman in a cave. Yeah.
Dr. Ian Wolfe: But it speaks to then you might have to consider more about your boundaries and thinking how do I maintain the integrity and trust and that power that then I do have now in a more dense area, you might have more access to different things and so the benefit burden balance might shift where you’re not harming the patient’s right to access unless you’re a specialist where there’s one of you or five of you in the area. If you’re able to move that patient to a different clinician that will remove some of those dangers and risks of bias and things like that. Although we would generally say we want what’s best for our friend’s child, the bias can cloud judgment and cause harm as well.
Dr. Bryan Fate: And that’s what runs through my mind is would I treat this child differently than any other child in my clinic? And it’s a tough question. And relationships and emotional attachments do complicate that. That’s a great perspective. I didn’t think of that. I am personally blessed with being in a metropolitan area where there are many doctors and many options and that does change as you get out of the country. To wrap things up, Dr. Wolfe, just thinking of one or two take home points that you would like to make for our audience.
Dr. Ian Wolfe: I would say that we often use phrases such as best interest and harms as if it has some particular context or that our definition has some authority and we should be cautious of this. Again, my assumptions are that no one is generally walking around the clinic or hospital doing unethical things. Parents generally want what is best for their children. Most ethical questions in pediatrics are disagreements over the proportion of benefit to the burden and the level of certainty around treatment effectiveness. I always find it helpful to ask, again, the question’s, how can we partner with a family going forward to achieve the best possible outcome for this child all things considered?
Dr. Bryan Fate: Thank you so much again, Dr. Wolfe. It’s been an absolute treat to have you on and do a special edition ethics version of Crack the Case, and I think we’ve talked about some really engaging cases and I’m sure there’ll be many more that come up in the future. Until it’s time to crack another case, a musical number to engage the emotive side of your brain and hopefully tug at your heartstrings.
Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amy Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.