MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast about the culture of medicine. I’m Mic Cavazzini, for the Royal Australasian College of Physicians.
Before I start today’s show I want to invite anyone listening to consider joining the podcast editorial group for 2022. It’s a pretty informal affair all conducted by email. I run potential podcast topics by the group and we discuss which ones to prioritise, what angles to explore and which experts to interview. Once I’ve recorded those interviews and cut down a draft, group members take a listen and provide feedback to polish it up before publication. The work for reviewers adds up to less than 90 minutes per month, and College Fellows can credit this to professional development. Application forms are at the webpage racp.edu.au/podcast. Please return them by February 7th to the email address you find there.
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And now for today’s show. I’ve shared with you before the podcast, Essential Ethics, from the Royal Children's Hospital in Melbourne, which explored some challenging paediatric case studies. In a new series titled “Deciding with Children”, the presenters return to one of the perennial questions in this space; when can a child be considered to have autonomy to make healthcare decisions for themselves?
The term Gillick competence is often used to describe this transition point, in recognition of a case that went before the British courts in 1985. Victoria Gillick was a conservative catholic woman who sued the Department of Health for advising doctors that they might on occasion prescribe contraceptives to girls without the permission of their parents. Crucially, 16 is considered “the age of consent” when it comes to sexual activity, but does that mean a child below that age should not be able to make decisions about their own health?
The case made it all the way up to the House of Lords but ultimately went against the plaintiff. A majority of Lords held that minors could, in principle, consent to treatment and that parents or guardians had no power of veto over this. They added, however, that doctors would need to establish, on a case-by-case basis, the young person’s capacity to understand the procedure to a sufficient degree that informed consent could be given.
Many questions remain though, such as what intrinsic rights does a young patient have up to the age of so-called Gillick competence? How should responsibility be shared between the patients, the parents and clinicians? And is it possible to minimise the moral injury when the wishes of the patient need to be over-ruled? To tackle these questions and introduce the speakers, I’ll hand you over to Professor John Massie, a respiratory paediatrician at RCH and academic through University of Melbourne.
JOHN MASSIE: Welcome back to a central ethics and this our six series which is called deciding with children. I'm your host John Massie, clinical director of the Royal Children's Hospital Children's Bioethics Centre. I'm joined today by our senior clinical ethicist, Professor Lynn Gillam. Welcome, Lynne.
LYNN GILLAM: Thank you, John.
JOHN MASSIE: Lynn is the Academic Director of the Children's Bioethics Centre and Professor at the University of Melbourne Department of Global and Population Health. I'm also joined by Professor Clare Delany. Welcome, Claire.
CLARE DELANY: Hello, John.
JOHN MASSIE: Claire is a clinical ethicist here at The Children's Bioethics Centre also at the Peter McCallum Comprehensive Cancer Centre, and also at the University of Melbourne. Keeping you busy, Claire?
Lynn, I might start with you. And just to get a historical background about decision making for children in paediatric health care.
LYNN GILLAM: Yeah, sure. Actually, John, I think it's probably helpful to get a sense of decision-making in health care, more generally. If we look back far enough, the person who made decisions about medical treatment was the doctor, and that was the case even for adults. And what we've seen happen over time is an increasing shift towards emphasis on individual autonomy and the adult patient making their own decisions for themselves. And I think that goes along with a recognition that in terms of what's in somebody's best interests, that's a partly subjective idea. So it depends on what that person themselves values and what their preferences are. So that's for adults.
Then in relation to children, again, we've increasingly seen the idea that parents have a role in decision-making for their children to where we've got to now, you're suggesting as the almost default position, parents and doctors share the decision-making about the child. Our question is, where does the child fit into that? Since the mid-80s, based on a UK court case, we've at least had the idea of the “mature minor” that at some level of development, an adolescent is essentially able to function as an adult, and that's the point at which they should be able to make the decisions for themselves in the way that an adult would. But the big space before that of, to what extent the child should be involved to what extent children's wishes should be sought or acted on in any way, that's the kind of grey area I think that we want to unpack.
JOHN MASSIE: And I think it's very interesting, Lynn, because in clinical practice, I see that patients will come as a baby and physicians or will develop a relationship and of course the speaking is done by the parents. Or parents will come a little bit later, but you know, they're making the appointment, they might be paying the bill, and so there's important to be discussing things with the parent. And it's, I think, just too easy to lose sight of where the child might be and understand where the child is even amongst people here practicing at Royal Children's Hospital—paediatricians elsewhere. So Clare, could I ask you, what do you see as the ethical principles that underlie that underpin deciding with children?
CLARE DELANY: Well, John, I think the ethical principles—the words are the same as what you would use for adults, when thinking about respecting a child or including a child's voice into their healthcare decisions. So if you include the child's voice and preferences and ensure that they're understanding what's happening to them, they're likely to be more cooperative. So the treatment will go better they will keep coming in, they won't be so anxious about coming in because they have some understanding. So you can look at that as an instrumental outcome.
And you can also take it out of that fine-grained, “Well, there's use in doing this because the child will cooperate more,” to “intrinsic respect for a child as a person,” which is the same as you would respect an adult as a person. And that means their wishes and thoughts and beliefs deserve respect or acknowledgement, and we'll talk a bit more about how you figure that out, and what it looks like.
JOHN MASSIE: So I wanted to move to Lynn. How do you think about the moral status of children?
LYNN GILLAM: One way of thinking about what value to accord to children is to think of them in terms of “how like an adult, are they?” And then you get this account of increasingly like an adult over time.” Why do we attach value to adults? For some philosophers, we attach value to adults because of their capacity for autonomy in a really, I guess, high level sense of reflection, judgment, being able to think through to make a decision that takes into account whatever moral aspects need to be taken into account. So for some philosophers, that's a reason for placing value on people.
One of the problems with that view is that it doesn't seem to give us a good reason for placing value on infant or a young child, or an adult with an intellectual disability who doesn't have the capacity to do those things. And yet, it doesn't seem right to say, “Oh, well, since they can't, they're not autonomous in that really strict since then they have no value.” The child, now, is a person. Persons have value because they're because they're a person, not just because they have this complicated intellectual capacity to be autonomous.
JOHN MASSIE: Claire, what about ‘rights’? So United Nations Convention on the Rights of the Child says that we should consider the child in matters that affect their life. So do you think that obliges us more strongly or we're already obliged?
CLARE DELANY: I think that rights language helps to articulate what is important for a class of people or for a person, and that it cements it into something that people have to take notice of. But I think in this case, the right language doesn't necessarily help the clinician looking after a child to know how to do it. A child can have a right to something but someone's got to give effect to that. Right. And I think that's where the complexity lies.
LYNN GILLAM: Yeah, it makes us think more about this thing as being important if we call it a ‘right’. So if we say a child has a right to a voice, that means the child has an intrinsic claim to being noticed for themselves as their own person. And as Claire said, someone has to give effect to a child's rights, it's really hard for a child to stand up and claim their voice claim their right to have a voice. So the right thing puts responsibilities or obligations on others. And I think that responsibility or obligation has to play out in terms of directly engaging with the child, not just imagine what they might
MIC CAVAZZINI: As we’ve heard, it’s important to try and glean a child’s wishes on top of their health interests even before they become becomes autonomous. But what do we actually mean by the term autonomy and how can you tell once it has emerged? It’s a question that comes up many times in this series of podcasts for Essential Ethics. For simplicity, I’ve pasted in a good definition provided by Professor Lynn Gillam in episode 2 before we go back to the conversation we were hearing earlier.
LYNN GILLAM: So it is helpful to think about what we mean by the term autonomy. So strictly speaking, autonomy is not just the ability to express a preference or to have an idea. Autonomy means having the cognitive capacity to think things through and having a formulated view of yourself and the world and what matters to you so you can take in information, relate it to your views and values and make a decision that will promote your life going the way that you want it to. Now, when you describe autonomy like that it's really clear, I think, that young children can't do that.
JOHN MASSIE: I mean, that sounds like Kant to me,
LYNN GILLAM: Yes, it is. And so when we're respecting adults autonomy, that's the kind of autonomy that we're talking about. And in that space where a child might be a mature minor and older adolescent, I that's the sort of capacities we might be ascribing to that 16 or 17 year old.
For younger children, when we talk about their autonomy—I’m wanting to put it a little bit in inverted commas, or at least to, to change the framing of it—where it means something more like agency capacity to, to be involved in discussions to understand what's going on. It's not necessarily the capacity to make a decision which accords with their deeply held values—so it's not autonomy in that sense. But there's still lots of ways in which a child has the capacity to engage in the world and their life goes better if they engage with what's going on around them. And their position and views are taken seriously by others. And to me, that's the bit that we're talking about, in particular, is really recognizing that there's not a sharp divide between adults and maybe Gillick competence; adolescents, whose views should be totally respected and acted on and then below that, children's views don't matter at all. We're trying to open up this space for children's views and preferences.
JOHN MASSIE: Yeah, I mean, I think that's why we're here having the discussion, but I think what I really take from that to Lynn is, is that we're not talking about ceding decisional authority to the child. And I think that it's an easy misconception and maybe easily picked up by, you know, perhaps an older generation who is used to children just doing what they're told. So we want to consider them involve them. But we're not saying you get to choose.
LYNN GILLAM: Yeah, and what the thing that Claire was talking about before, as well about the nature of the decision, that's also important to take into account. So there are some choices that would be perfectly reasonable to offer to young children about which arm to have an injection in or whether to sit on the chair, or sit on mum's lap, or whatever it is—which might seem really small to us, and we don't necessarily think of them as a decision, but they're important in the child's agency in interaction with the world. And it is within the scope of the child's, I guess, capacity to make a decision for themselves that they can decide which arm and it doesn't matter, medically speaking, it doesn't matter in terms of the procedure. So if we can give them that choice, respecting the child's right to voice says, if we can, we should, because that's. You know, an instrumental but also an intrinsically valuable thing to do worthwhile thing to do to, to bring that child more actively into what's happening.
CLARE DELANY: I just wanted to pick up on Lynn's characterization of autonomy being to do with a decision, which is which accords with your life values and is perhaps consistent and represents you. And I would think that a three year old who persistently and consistently asks for a particular thing, you know that their purview is—that's their life world, and they are consistent about this desire for the moment.
LYNN GILLAM: Yeah, so that's a really good point Clare. And I think that what it shows is that having consistent values is not enough to give you capacity for autonomy in the Kantian, full-blown sense. Because a child might persistently want, as we sometimes see in Main Street here, an ice cream every time they come in. And that doesn't change, that's always the case, doesn't mean we should give them the ice cream, doesn't mean we should give them the ice cream instead of whatever treatment they've come in for. So I think it shows that just having stable values is not enough. We want for that big, really full-blown idea of autonomy, we want some sense of, I guess, context and long term and understanding competing considerations and so on, which is the bit that the three year old, doesn't have.
CLARE DELANY: Yes, and I think the value though, in acknowledging the three year old’s, consistent preference, but not perhaps sophisticated understanding of the meaning of their preference, or their long-term effect is that it also promotes in a child a capacity to, or motivation to, think for themselves. We promote a child's wellbeing by getting them to exercise or eating as well as they can, because we know ultimately in the future that's going to benefit them. And similarly, if we can start promoting their capacity to be involved in their own health decisions…
JOHN MASSIE: Is that the doctors job clear? Is that the parents job?
CLARE DELANY: Good question. I think it's I think it is the doctor’s job. I think it is a health practitioners job. You can't just only focus on clinically what you're doing and ignore the child as a whole, that’s a sort of fundamental—
JOHN MASSIE: And I think that comes out and chronic diseases, where we're looking to have a young person who then becomes a young adult, who knows about their disease, knows what goes well for them, knows how to make decisions and actually knows how to work the system, which is sort of related to this.
CLARE DELANY: There's one question I wanted to pick up on. when you asked, whose responsibility is it? Is it the doctor’s responsibility to ensure that the child's voice is heard, or is it the parents responsibility? Do we leave it to the parents or do you take over at some point? And I think that's a really interesting question. Because, you know, we acknowledge that parents are the experts around their child in you know, they've, they've brought the child up in the way that is best for their family and as best they can. When the child comes into hospital, what happens to parental authority? Because the decision is now about health and illness and procedures. Parents aren't experts about that. So what is the extent of the clinician’s responsibility to take over from parents?
LYNN GILLAM: Yeah, I think that's a really challenging question, Claire, because as you say, when it's about the decision about which medical treatment or form of healthcare management to have, it's easy to see that clinicians have expertise about that. When it's a question of, to what extent the child gets to be involved in the conversation, or express their views, that's not a matter of medical expertise. And I guess different parents, in different families have different views about that, and bring their children up to be more or less active and engaged and involved in family decision making. Or else to be, essentially to follow the parents lead and the job of children is to do what the parents want them to do. They're just different views about that. So it is challenging to think about, I guess, clinician stepping into that parent child relationship.
JOHN MASSIE: But yeah I mean, I think as a paediatrician, we're thinking broadly about a child's life going well. And we know that regardless of the parents view about them, the child's going to turn 18. And there may be cultural elements that they still make decisions as a group or a family in that but, however, they’re still going to be expected to make some decisions. I don't think it's necessarily all or one or both. I mean, I think there's an element of the doctor coaching the parent to coach the child in the medical setting and become a decision-maker. Is there a sense of timing, though, where you think that the obligation to start including the child with their ideas starts?
CLARE DELANY: Well, I guess, it doesn't seem to hugely important when they're newborn to, to take some time to look at their experience. Although I would argue it is valuable but it might not be as obvious to some people
JOHN MASSIE: This is the new grandmother speaking, Clare.
CLARE DELANY: Oh no, no. Well, it's also the PhD supervisor who's whose student is looking at the experience of a child in NICU of a baby. So I do think there's a there's a shift even to recognizing the value of learning from a child's expressions. But it also depends on the nature of the decision, which if it's a really simple decision, then you can bring the voice of the child and much earlier and for good reasons. If it has sort of serious consequences then you might want to evaluate, “does this child have the capacity to understand this such that they can contribute?”
JOHN MASSIE: Some accounts of this might consider that once a child is able to express a preference, then the moral status increases in this space from simply being alive and a person, to now they can express some preferences, and therefore we need to take that into account.
LYNN GILLAM: So I was thinking, when you asked Clare about, “When does this start?” it's tempting to say something like, “Well, it starts when a child is able to talk, and then they can tell us something about what they think.” And a two or three year old can easily express in words that they are frightened of this, or they don't want to do that. But actually, if we think back even earlier, even children who are not able to talk can quite clearly communicate their feelings. So if we're thinking about the voice of the child, I think we need to take it not too literally; it's not just what they're able to say, it's what they're able to communicate with us.
But of course, that doesn't mean that we should make our decisions just based on the child's aversion, for example. So if a baby doesn't want to be vaccinated or scared of a needle coming in, that's not a reason not to vaccinate. But it is a reason to take account of that and say, “We don't want this baby to be frightened. We don't want the three year old to have to have a procedure being forcibly held down.” So their view about the situation matters and should be taken into account. Even if it's not going to ultimately determine whether the procedure happens or not. It might have an influence on decisions about how to do that procedure or when to do the procedure or where the procedure is, is done. So it's I think it's helpful if we think not just about the medical treatment decision, but all of the decisions around it.
MIC CAVAZZINI: So autonomy is the ability to make considered decisions for oneself, informed by an understanding of the immediate and long-term consequences of the action. But at what point during development might that actually emerge? In the second episode of this series of Essential Ethics, John Massie and Lynn Gillam spoke with developmental paediatrician Daryl Efron. He’s an Associate Professor at the University of Melbourne, a chief investigator at the Murdoch Children's Research Institute and has practiced at Royal Children's Hospital for over 30 years. He started with a potted timeline of brain development and the associated cognitive skills.
DARYL EFRON: So firstly, brains are built from the bottom up from the brainstem up to the cortex; from the simple to the complex. This is a programmed sequence of events that begins in foetal life continues very rapidly through the early years, but actually continues through childhood and adolescence and now we know even into adult life. Infancy is all about secure attachment, really, that's the key developmental task of infancy. But in toddlerhood, it's kind of the opposite. And that starts to get into our territory for today is autonomy and separation from parents, beginning, you know, sort of in the second year of life, then there's the preschool period, which is, you know, magical thinking, fantasy play, and increasingly social development in relation to other peers and other individuals. And then the primary school years, which is where the cognitions become really quite complex, is a lot of problem solving a lot of logical reasoning, relatively concrete thinking, but increasingly abstract through those years as well. And identity formation; “Who am I, what am I preferences, what are my values?” starts to happen through those primary school years, and a self-concept and in fact, moral development. So I think when those things are all happening in that healthy sequence, then it will inform what we're going to talk about involving children in decisions.
LYNN GILLAM: John, can I ask Darryl, a question at this point?
JOHN MASSIE: I've got so many too—Oh get in there Lynn.
LYNN GILLAM: So Darryl, you're saying this process continues into early adulthood. So what's the last bit that happens?
DARYL EFRON: So the skills and capacities that human beings have acquired ontologically most recently are acquired the latest, and are also most vulnerable to injuries from any insult to loss. So that's really those prefrontal cortex, and what's called the frontostriatal cerebellar circuits,
LYNN GILLAM: Not by me
DARYL EFRON: Not by you. So we're talking about things that you do know all about Lynn, which is about judgment, about the capacity to self-regulate the capacity to reflect and to think about your own behavior in relation to other people and consequences, and more distant goals as opposed to immediate rewards. All of those qualities that the psychologists tell us are critical for success. Not “I want that now” But “I'll do my homework first, and then maybe I'll get that.”
So I think you've seen some of those skills, developing from school entry, okay. That's why we say kids can sit down and attend to tasks, and withhold immediate needs for increasing periods of time—10-15 minutes—to work on something that's dull and boring, a spelling sheet or something in the classroom, even though they'd rather run around in the playground. From about school entry—that’s why we put kids in those sorts of groups, but it continues to evolve right through to adult life. And the other thing is the white matter, that connectivity between different brain regions continues to evolve well into the third decade of life.
JOHN MASSIE: And there are many amazing things in that. And what I liked, Daryl was that, that supports our concept of deciding with children is that you've described some of those steps at a much younger age than I might have thought and where the judgment is starting to come in and, and even “who am I” and my value—in primary school, not just in what we call adolescence, which is really important to what to what we want to say. And then just towards the end then you mentioned that difference in immediate goals and capacity to appreciate more distant events. And I think that is something that in ethics we're often up against; the adult’s ability to think long term and think of best interests for what they think is the child's life project and the child's more immediate wishes. And what about though, you know, starting to provide medical information to kids, which, I guess might be part of that journey of decision making? When do you start talking about that with kids?
DARYL EFRON: Well, I think we're always making some sort of informal assessments of the kids understanding of what's going on in the consulting room or on the ward, you know? And that's based on what we know about their developmental status, you know, their age and their cognitions, and so on, and how they communicate with us. So, I'm not sure there's an answer to when do you do that, I think general principles should be that as a default, we should always at least ask permission if we're going to be doing anything with a child. And in terms of some medical activity, some procedure, for example, or some treatments or medication that needs to happen to the child, I think from a younger age than many people might assume we should be involving children, at least in terms of explaining what we're doing and why we're doing it.
JOHN MASSIE: And it also suggests, though, that the environment that us as healthcare workers are providing, contributing, perhaps, to that moral development. So when you say you're talking to the infant, you're explaining you're undressing them or you're talking to an older kid and explaining what might happen to them for their immunization, that potentially, might be short interactions, but you're perhaps contributing to that development.
MIC CAVAZZINI: This is an interesting idea. That healthcare is not just a place where a child observes and sometimes participates in decisions about their wellbeing; the experience itself can be a formative one for the child’s moral compass and their attitudes towards authority or civic institutions.
Let’s imagine a kid who’s not too keen on needles and protests loudly at being given the COVID-19 vaccine, that’s now been approved for children over five. Few parents and even fewer physicians would take the child’s resistance as a reason not to give these protective interventions. “Best interests” over the long-term are deemed too important, and it can be assumed the child isn’t able to weigh these up over the short-term discomfort or side effects. Is it then disingenuous to ask the patients’ preferences if there’s a good chance that they will be ignored or overruled? We’ll hear first from Lynn Gillam and John Massie talking with Clare Delany.
LYNN GILLAM: A potential danger is we engage directly with the child, we're interested in what they've got to say we hear about their concerns, we elicit their preferences, we've met our ethical obligations, and then we just do the opposite of what they said. Is that just really disrespectful to the child or really deceptive to pretend to care about what they say, and then say, “Oh, it actually doesn't matter what you say, we're doing this,” So does that mean we shouldn't have engaged them in the first place?
JOHN MASSIE: I mean, I think kids have a great sense of natural justice, and I think we have the risk of creating moral injury. We need to think ahead about minimizing that, but accepting, Lynn, as you said that, perhaps in their best interest, they're going to have to proceed with something that there’s an element of noxiousness.
You known the American Academy of Pediatrics in their 1995 document about assent and consent and dissent basically said, “Well, if you're not going to agree with what the child does, don't ask them.” And, you know, that that at first look is pretty pragmatic. Medical decisions are often made very quickly. So of course, if you're going to go to theatre to do an operation, or there's no choice about it, then we're not going to be presenting either the parents, or the child with a choice or with a right of veto. However, that's not to say you shouldn't include them in discussion about what needs to happen, and frame that in a way that can include them, and in an instrumental sense, try and get some locus of control for the child.
But I think there are practical things that one can do even when you know, the child won't want it. But having recognized that we've done something that they really were unwilling to have done, perhaps then we need to circle back afterwards and say, well then, is there something we can do afterwards that might also in the dress the house that we've created? And obviously, a lot of it's done in an instrumental way, but I think, the audience now will be thinking of an intrinsic, respectful—I don't know if you call it an apology. I've had some disagreements with practitioners about apologizing to children. And I'm not sure that that has to be around the word apologizing, but it's acknowledging that there's hurt.
LYNN GILLAM: That is an idea in the literature, isn’t it? It's been suggested that the ethically appropriate thing to do is apologize to the child afterwards, if you had to do something; if a decision needed to be made to go against what the child wanted, you should go back and apologize.
JOHN MASSIE: That's why I don't necessarily like the word apologize—it’s very much like a football or apology if what I just did to you was hurtful to you, then, “I'm sorry, you got hurt.” You know what's that about? I think that’s not what we mean, I think it's acknowledging that something had to be done, there's a greater purpose, and that exploring what's left over.
CLARE DELANY: Yeah, maybe it's not apologizing, but rather, it's giving the child a chance to debrief or tell you about what that meant to them, which is different to an apology.
LYNN GILLAM: So that's really interesting, because the apology—I was about to say, I quite like the idea of apologies—but the apology comes from the clinician, so it's the clinician’s voice. Whereas what you're suggesting is giving the child a chance to tell you how they felt about the that, which is the child's voice, isn't it? Which is what you were trying to do in the first place. So I really like that idea.
JOHN MASSIE: Which is not the physician trying to make themselves feel better about what's just happened. I think what we're talking about is by respecting the person, we're trying to minimize that moral injury. Actually going back to what we've started with; respecting the child and their views about what's happened.
MIC CAVAZZINI: Let’s go back to the conversation with Daryl Efron, and some of his suggestions about how to give paediatric patients a sense of agency, even if only with some of the smaller decisions about their care. There’s also the idea of that you’re responsible not just to the child in front of you but to the person they will grow into, who may be more sympathetic to the best interests you have in mind for them.
DARYL EFRON: I think this question of respect for the child, it's all about how far do you take it, I suppose. So a common scenario is the child doesn't want to do what we think is best for them; the example of having a plaster on a broken arm or, or taking medication or something like that. What do you do in that situation? Is it respectful for the child, there and then, this is an amateur ethicist talking here to say, “Oh, you don't want to do it, okay, I won't do it.” Or, “I really respect you. I know this is going to be good for you. But you won't be able to see that now. But down the track, if I talk to you as a 14 year old, you’ll understand why I've done that. So because I respect you, I'm going to override your wish not to do this.”
In my mind, I first of all, try to be as clear as I can, how important this thing is this, this healthcare intervention. How important is it really? You know, and in my practice prescribing psychotropic medications is a common example. You know, it's not life and death. But I think it might be good for the child. And, I guess, the stronger I feel about it, the more I'll try and bring the child round, working with the child, enlisting the parent as an ally. And it doesn't always work, but where that's possible. But then that's a bit a little bit dangerous, morally, I suspect, because you can be seen to have the big people ganging up on the little powerless person. Yeah. So none of this is straightforward. Yeah.
LYNN GILLAM: So Daryl, can I ask you to comment on that question of offering the child a choice? Because not there is, in the end, they won't have a choice.
DARYL EFRON: Yeah I don't think that’s the right way to frame it for most—I mean, there might be some situations no choice. And I've heard you talk about that, this plaster one that you'd spoke about recently, a blue plaster or red plaster, those sorts of choices, where available, are good, you know, it gives the child a sense of control. But I think there are many medical decisions where it's not really a choice. It's about how you try and bring the child around to see the value in the intervention, okay?
Which is not straightforward, but I think it starts with something you've touched on, John, which is sharing information. And I think you’d be familiar with this, we sometimes need to have the same the same conversation next month or, or next week, so that the child and the family can consider what we're proposing. It's a good strategy, actually, and I often do that in difficult situations; “Well, this is what I suggest I can see, you know, you're not sold on the idea at the moment, but this is what I'm suggesting, this is the reasons why don't we talk about it again in two weeks?”
And I think there's things that don't always happen that we don't always do—very simple things that can make quite a difference. Just explaining what you're going to do, and reason why you're going to do that. And we probably rush it sometimes, and we probably don't listen to the child's response. And sometimes just reassuring the child they might have two questions, and they might be things that we hadn't thought we hadn't realized they were concerned about, or worried about or misunderstood. If you just take a few minutes, often you can make the situation go more smoothly than you might have predicted. Not always but often. And if the parents see that you care about the child, and you’re respecting the child, they’re more likely to trust you, as the doctor, and come on board, moving forward.
LYNN GILLAM: Are we allowed to tackle a difficult topic, John?
JOHN MASSIE: This is Essential Ethics, where difficult topics we eat for breakfast.
LYNN GILLAM: Okay, so let's have a go at eating this one for breakfast. Maybe sometimes the parents don't mind so much that you respect their child, maybe they're more focused on the outcome of we need to get this vaccination done—we need to get this procedure done. Have you ever found yourself in situations where you want to negotiate and talk with a child more than the parents want you to?
DARYL EFRON: So yes, absolutely. So in developmental practice, we often speak to children alone without the parents, pre-adolescent children. And it's really valuable. But sometimes the parents are surprised. And sometimes the parents don't particularly like that, right? And so not very often, but occasionally—I've had occasion one not so long ago, actually, where the parent didn't want me to be alone with a child. Which rings alarm bells, actually. I mean, it might be that they open up and disclose about things that are happening in the home that they couldn't say in front of the parent, it happened, sometimes protective sort of things. But just for them to generally speak more openly and freely, it's often really valuable. And you get a more nuanced understanding of what if the child's perspective on the issues.
LYNN GILLAM: But the parents may not see their child in that way. Or they may say that their role is to even protect the child from that.
DARYL EFRON: Yeah, there's all there's all sorts of reasons why parents may not be totally comfortable with that, and it might just be that they weren't expecting us, I suppose. But I mean, it's valuable to us because we often get a less restricted, less inhibited child. The other example I was going to give though, for my practice, which I think relates to what you're saying— monitoring of side effects of medications in children. And I'll give an example that happens from time to time when we use stimulant medications to treat children with ADHD. We are usually helpful to improve symptoms and usually well tolerated apart from suppressing appetite, which happens most of the time and you've just got to go wear that. But occasionally, it causes cognitive dulling. The child's lights are turned out, they're not the same child. And usually, if that happens, which is about one in 10, the parents don't like it, they call you up, “This drug doesn't work for my child, it's turned the lights out, I don't like it.” That's what you would want parents to do.
But sometimes the parents bring the child in a few weeks after you've started the medication, and the child looks immediately different to you. They're quieter, they're not engaged. They're much less animated. And you say to the parents, “How things going?”, expecting them to describe what you can see. And they say, “Oh, good, he's quiet, now. He's not causing any trouble.” And so you point to the child, “Is this what he's like at home, now?” “Yeah, he's really good. He doesn’t an answer back.” So that that's fascinating to me. And I've had a number of situations where I've said, “Look, that's not what we're trying to achieve. That's not right, we have to stop that medicine.”
LYNN GILLAM: And so where does the child's view come into that? Does the child get to say how they feel about it?
DARYL EFRON: The child always gets to say how they feel about it. Always. That's what I demand, anytime. I'm talking about stimulants and ADHD, now, or other medicines that might alter how the child feels where the subjective experiences is obviously a key part of potential benefits and potential side effects. So it's really important to ask the child—when you start the medication to tell the child that, “Next time, I want you to tell me how it feels.” And the next time you see them to ask the child in different ways, “How does it feel? Do you feel different? Do you feel weird? Do you feel strange?”
LYNN GILLAM: So in the situations, you've described, that opening up a space for the child to say something different to what their parents are saying?
DARYL EFRON: And to what their parents have observed, and to what their parents may know. And it's not uncommon, that when you ask the child, they'll talk about a side effect that the parent didn't know they're experiencing. Because the parent hadn't asked.
JOHN MASSIE: So I guess the question if you don't ask, you don't know. So, Daryl, how do you handle that when the parent wants to keep going with the medication? Are you then making the decision? Are you drawing the child out to say how they feel and so it becomes obvious that it's the child's—
DARYL EFRON: It's uncomfortable. And, you know, then as you have that conversation, you know, it's pretty clear to the parent that it's not right. But the actual the decision-making is not that difficult. Because I just look at the parents and say, you know, “That's an unacceptable side effect. I'm not comfortable with that. This medicine’s not working for your child. Let's think about what else we can do.
JOHN MASSIE: Well Lynn, that really is deciding with children, isn't it?
LYNN GILLAM: Yes, and I think it's a really good example of how it's deciding with children without leaving the ultimate decision with the child. So Daryl, you didn't say when this happens, I turn to the child and say, “Okay, child, you decide. You choose whether or not to stay on the medication.” The way you've described it, you actually took the decision, but the reason for the decision was very much the child's voice—what the child was saying to you about their experience.
JOHN MASSIE: But I think it's the special work of paediatricians, isn't it? It's to bring the voice of the child forward. And I think it's easy for deciding with children to be misconstrued. If you just read it, you might think, “Oh, well, that's just ceding decision authority to children, and they either shouldn't have it,” or slightly nuanced, “it’s not fair for children to have to make these decisions.” And that's not what we're about, what we're going to do is bring the voice forward and have their reasonable concerns and thoughts included.
DARYL EFRON: I think the field’s really evolved, and John I’d be interested in your views on this. But you know, we now have a department of this hospital and assuming it's similar things in other major centres. Internationally, I think they call it “child life therapy”. And there are now, you know, a whole range of strategies that are very psychologically based and nuanced and individualized for that child's situation with a lot of preparation and so on. Which is totally to address the problem about having to do things against the kids wishes, and sometimes you just need to, but we can do it much better than we used to.
JOHN MASSIE: And I think what we see at the Children's where that's super important becomes in chronic disease, where we're going to have ongoing involvement. But actually, when you when you think about it, people are going to have disease and illness and things done all through their life. And while it might be a one-off event for your tooth extraction, your arm-resetting or something, that might set their whole life’s healthcare project back if it goes badly. And so things need to go well, both out of respect for the person and instrumentally. But if we accept that we have moved, and we're putting the child into the centre of our care into child and family-centred care. What about the next step? So I was thinking too, in terms, though, that it might lead to some coaching; coaching of the kids; coaching of the parents to coach the kids, in terms of bringing them forward, augmenting their decision making capacity thinking of the future. Daryl?
DARYL EFRON: Yeah I think that's right, John, again, whether the language is coaching or modelling—and I think coaching is actually is quite a good word. Most kids haven't had the experience of being asked to be involved in these sorts of decisions. They're quite, you know, they're challenging decisions. In everyday life at school, and so on, the stakes aren't as high. So it's actually quite confronting for some kids when you when you involve them in these conversations. But if they can stand up to it, and if you persist, they enjoy it. And as you say, John, for chronic illness, it's so important to involve them over time for so many reasons. And you haven't used the term, but you've alluded to the idea of sort, of medical trauma and post-traumatic medical stress, and it's a very real entity and we see that.
But then I think another aspect of that is modelling of the respect and trying to understand children's perspective I think is really are important for doctors to do for parents. Particularly, you know, for parents who've come from traumatic backgrounds or backgrounds where they just haven't had the space to, or their own experience of childhood and how they were parented just hasn't permitted them to think in that way. So I think there's that modeling aspect.
MIC CAVAZZINI: Many thanks to John Massie and Lynn Gillam for letting me share their fabulous podcasts with you, and Clare Delany and Daryl Efron for their wise contributions. You can find full episodes at rch.org.au/podcasts/essential-ethics, and be sure to check out an earlier series called the Ethics Toolkit.
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In a soon-to-be-published article in the MJA, Professors Gillam and Massie explore the ethics of giving COVID vaccinations to a consenting child against the wishes of parent, a timely re-enactment of the Gillick case and test of how far we’ve come in recognising capacity in a minor.
I’ll put links up at the episode web page nested under racp.edu.au/podcast. You’ll also find a transcript to every episode and don’t forget the applications for the podcast editorial group. Our contact email is email@example.com. Look forward to hearing from you, I’m Mic Cavazzini.