 Well, good evening ladies and gentlemen other distinguished guests My name is Dr. Cathy Liddell and I'm the director of the Law Faculty Center for Law Medicine and Life Sciences And it's on behalf of our center and the Cambridge Science Festival That I'm delighted to welcome you to this 2019 Baron Delancey Lecture Knowing some of you who are here as you came in through the doors. I am Confident that we've been joined by people with a wide variety of backgrounds lawyers naturally, but also some doctors philosophers students and members of the public and I could tell you that this diversity is Fantastic and just what we hoped for I also am sure that we share something in common relevant to this lecture. No doubt many of you are parents and I know as a Sure fact that all of you have been vulnerable children at some stage So we are very fortunate and Grateful that the lecture series is funded by the University's the Hayden-Delancey Fund Which exists to support medical law research and teaching The fund was bestowed by a foundation in Jersey which was set up in 1970 in memory of Baron the Hayden-Delancey and we are delighted that Two trustees from the foundation are here tonight. Dr. Charlotte Ritter Dr. Basquant and Hupec Dr. Ritter, I hope she doesn't mind me saying he's a descendant of the baron's wife And I've had the pleasure of learning more about the baron through her and her husband The baron was by any account a flamboyant and extraordinary Dutch man He was at various stages of his career a doctor a dentist a High-finance lawyer and an art collector So clearly a curious and intellectually agile person he became not only a baron but also a public benefactor and Long story short here. We are benefiting from his endeavors So as we are a relatively new center This is the third year that we've had the opportunity to organize the baron's lecture But the series has had a long history of distinguished speakers. I Won't give you the full list, but just by way of example the first baron-delancey lecture That I personally attended was given by Dame Elizabeth Butler Sloss Who was then the president of the family division of the court of appeal and She talked about several court decisions affecting the beginning and the end of life And other lectures have traversed everything in between so in 2016 for example, we had a QC speak about informed consent and medical negligence in 2011 the topic was pharmaceutical regulation and last year Professor Glenn Cohen from Harvard Law School discussed emerging reproductive technologies Tonight our subject is medical decisions for young children In particular the role of their parents the courts and doctors when there is a disagreement about the child's best interests so cases involving Charlie guard Alfie Evans and Asia King brought this issue to the nation's attention We are very pleased that our friend and distinguished academic Associate Professor Imogen Gould has agreed to give the lecture Imogen comes from that other great English faculty of law the one Who must not be named? And if you're thinking that it's the University of Voldemort, it's the other At that place you know where Imogen specializes in medical law She has written some terrific books. I've brought the small prop just a couple of them here and She has a real talent for unpacking controversial debates in medical law with rigor and insight and Proving that this particular book we like very much It's called great debates in medical law and ethics And I think that that is certainly what we're going to witness tonight So Imogen the floor is yours Thank you Kathy and thank you also to Jeff and to the Boundalancy Foundation for having me. I'm very honored to be here in what we call the other place And so I'm going to talk to you today about Issues around parents having the final say on the medical treatment of their children. My work today is based on a paper I've been writing with Dr. Creston Auckland of the University of London School of Economics And then it's also the topic of a wider project A forthcoming Edison collection of essays about this question So what am I going to talk to you about today? Well over the past few years the English courts have been called upon to grapple with A question that actually seemed quite well settled in English law And that was who should have the final say over the treatment of a very ill child Now we're concerned with cases today where the child is very young So we don't mean gillet competent children. We mean children who are too young to express their own wishes And so therefore they can't express meaningful views and someone else and therefore needs to speak on their behalf And these are cases as well where there are conflicts so conflicts between the treating team and the parents So the cases like Charlie Godd, Alfie Evans, Isaiah Hastrup These are the sorts of cases that I mean to speak about Seaman Now I imagine that we're all very familiar with these cases and the reason is That they dominated the headlines of the newspapers over the past three three or four years But I'll tell you a little bit for those of you who are not who are not particularly clear on what happened in them To give you a sense And they are very fraught and I think people have a lot of opinions about what went on in those cases And I shall try to be relatively practical and fairly simple, but there's certainly debate about the facts as well as what should have been done So with Alfie Evans and Isaiah Hastrup the key issue was that his parents each child's parents wanted sustaining care to continue And they wanted it not well particularly in Alfie's case to extend his life a little bit It's unclear how much they believed he might get better But the key thing was to extend his life a little bit With Charlie Gard the situation was somewhat different And as many of you will know in that case An American doctor offered an experimental treatment which the parents wanted to take They wanted to take Charlie to the United States where he could have this treatment in the hopes that it would work Even though it hadn't worked in any case like his before But they constructed this as there's a tiny chance we should take it However, Great Ormond Street Hospital was concerned that it wasn't in Charlie's best interests And this was the issue the court explored was it in his best interests to travel to the United States and have this this small chance If it was even a real chance You might consider it futile You might not and that is a matter of some some debate But the the other thing on the other side was it was potentially harming for him to travel That it would have been distressing potentially and because they couldn't fully tell how much he was experiencing So it wasn't a simple thing to take him to the United States And it was very much what that litigation was about exploring Now the courts have made it clear that they have the power to make medical decisions or at least Authorized decisions at the point at which a child's welfare is engaged. So that is the threshold point And all the courts affirmed in these cases that this this was the position they would take So what we would what i'm going to call the orthodox position It's often referred to as the best interest approach, but we also talk about it in terms of welfare We should see this as synonymous But what's happening here is the courts are stepping in and the case of a dispute Where the hospital or parents have have asked for leave to have it decided And they approach the issue from the perspective of the child's best interests And and so my concern here today the thing that i'm interested in talking to you about Is not whether best interest is the right approach so much But rather what is the point at which courts can involve themselves in these kinds of disputes because that's the key Interest again essentially new issue that comes up in the guard litigation So what this boils down to the issues that surround these cases are who should have the final say and there's actually three parties You might say might have the final say about what is to be done You could say it is the courts which is the orthodoxy you could say it's the doctors And then in fact the courts couldn't override doctors Or you could say it's the parents And the subsidiary question to this is what is the point at which the court would have authority to intervene Is it when welfare isn't engaged as it currently is or is it some other threshold? And that's the challenge that was made in the guard case Now you might wonder why is this a live issue? The courts have had a say at every level We've had a clear answer to this question So the court of appeal and the supreme court confirm the orthodox position in guard and in evans That the court can intervene when the child's welfare is engaged But actually there's a number of reasons why we might think that this is a live question that needs attention And one of those is the public reaction to these cases So there were outpourings from from some quarters of the public With the belief that parents should have the final say So these are a few examples of the sorts of things people had to say So no matter how skilled the doctors this wasn't their decision to make They should have recommended a course But they should never have felt it was their right to impose their wishes over those of parents Charlie guard's father Chris said our parent parental rights have been stripped away And that notion of rights is one we'll come back to Another comment when it's a child doctors and judges can play the god role and leave the parents powerless So there's real sense in some of the comments about this case that the parents here were being disempowered That if anybody who should speak it was them And in response to to the situation both Charlie's parents and Alfie's parents have moved for changes to the law So what's it called Alfie's law and also Charlie's law? And one key dimension of these proposals Is that they would shift to what we'll call a harm threshold that parents will have the crime facing first say And in fact that won't yield unless their decision is likely to cause significant harm to the child So much higher threshold before courts can intervene. That's what they're proposing Now so far these efforts to change law have been unsuccessful But it doesn't mean that they've stopped in their channel. So that's one passport But public concern about the law isn't the only reason and it possibly isn't good enough Or isn't in and of itself to simply say we should change the law and I don't think it is the only issue here So there's also the legal question Now in one sense the law on best interests has been well settled for a long time So the courts have for a long time taken the best interest approach and they have in the course of that I think developed a nuanced Considered thoughtful sensitive approach to dealing with these kinds of cases There are numerous cases in which we see that the courts have worked out How will we determine what is in the best interests of the child? And I think there are many judicial statements in which they demonstrate a greater sensitivity to the place of parents It simply isn't the case of the courts come in and stomp all over what the parents want. That isn't how it works at all It's quite the opposite in fact But I think the interesting question is the one that is raised in GAR is the point at which The courts can in fact step into a situation And so this is what was proposed In the GAR case in the Court of Appeal Where they say well actually the way we should approach these the point at which the courts be able to intervene is in fact When the parents might have harm and other than that we should leave parents free to discharge their responsibilities It's actually framed us when there is a possibility when there's a serious risk that they will cause their child significant harm Otherwise parents make the final decisions Now in doing this they drew on the language of the Children Act And the threshold for for care proceedings And a care order to be made But actually this isn't a threshold that just derives from that. It's one that's been widely debated in the ethics literature It's in fact widely supported in the ethics literature on these kinds of cases Now there's reasons why the GAR case enabled this kind of challenge Now usually the kinds of situations we're talking about are ones in which the parents are busing up against a treatment team And the treatment team don't want to give the parents what they want The parents don't have another option. So you have this conflict Parents versus treating team and that's it And so in a sense you have an impulse No one can get any further But actually the guard situation is different and counsellor in the guard situation Use this as a way to to to to make their challenge So in that situation in actual fact, there was a choice between treating teams So there was great Ormond Street hospital and there was the American doctor Dr. Harana who was offering the experimental treatment So in this case the parents didn't have the same kind of impulse They weren't arguing with the doctors. What they were arguing was they wanted to be able to take Charlie to the United States for this treatment At the point when Great Ormond Street wouldn't give them the treatment And Great Ormond Street had had reasons. So there's a complex story there that I won't go into But Great Ormond Street had very good reasons for why they didn't want to do this And they had in fact explored the possibility of this treatment But then Charlie's condition had deteriorated to the point where they didn't feel that it was in his best interest even to try So Great Ormond Street didn't think that Charlie should travel And so the matter came to court because what the parents wanted to do was take him from the hospital and take him to the United States So in that case they framed this as well, this isn't an impulse But instead this is a matter where parents are taking a decision about the choice of treatment approach between two medical teams they prefer Harana's approach And so that then enabled Counsel in that case to say well, this is a different sort of situation to our normal best interests We don't need the court to come in to get passes in class And rather instead the court should stay out of this because this is the matter for parental choice parents are Allowed all the time to make different treatment decisions amongst a range of options that are put to them The interesting thing about that is that this was a case where a medical team was putting an option on the table That another medical team was saying we wouldn't put that option on the table And so they're making a menu of choices in a sense and the parents argument or counsel's argument was they should be Permitted to choose amongst these seemingly reasonable options And we'll come back to that in a moment But the third reason I think that this is a live question is that it actually demonstrated the breadth of the court's power to intervene So usually what we're looking at is whether or not a treating team has to sustain care and how we will navigate that But in both Evans and Gard there was a bigger question or a different question Which was whether or not these parents should be permitted to take that to an outside the country And would the court be permitted did the court have authority to say to them? We will prevent you from doing that as well So this is an extra question here And it was a question that's probably familiar from cases like usher king as well But but it's particularly A question in both guard and Evans That was well established that the court could make declarations about what care the child could receive but could they make this decision And law justice McFarland and in guard said yes He says it's if necessary and one hopes it won't arise But we could make an order backed up and by an injunction To prevent the removal of the children So what we see here is it's revealed that there wasn't already a power that the court has very broad powers very extensive powers Now the fourth reason I think that this is a live question and what we should think about Is that there is very strong support for a move to a harm threshold in the ethics literature? And there has been for at least a decade And i'm going to explore another the reasons why that is later on in this talk So it isn't the case that simply because we have a judicial position on it But this is a question that we should allow to drop There there are and there are certainly people In our community who think that this is this is an area where the law should change So I think that we need to give it really deep consideration Now normally when I give a paper I come into that paper with a position and I want to argue for it I want to convince you why I'm right But I can't unfortunately do that for you today So this is a situation in which I am conflicted. I don't know what I think completely And this is funny because I've been thinking about this for about a year and a half now and I still don't know what I think So much so that my co-author and I have been debating it amongst ourselves for weeks So much of this week I rang her up and I said are we sure we think this which is I've made my piece with it But and I said I haven't quite made my piece So I'm coming to you and I'm very interested in your perspectives on this is someone who's Who is not sure if we have most of our conversations When I put my own children to bed and I'm on my way to Tesco is to get some milk for the morning breakfast So the regular custom customers of Abington Road Tesco is a well versed in the intricacies of the guard decision and the very segments on either side And I'm sure they could all weigh in quite articulately at the search So why am I conflicted? Why can I not make up my mind? Why is it complex? Well, the part of the reason is That there is space for reasonable disagreement about this But the other reason is that there are multiple perspectives that we need to take account of and to understand these questions from those perspectives So one of them is the realities of decision making in medical settings That when we take a position in the law it has implications for how doctors and nurses and other staff in hospitals do their job and talk to parents And they have their own perspective on the implications of how they have those conversations and how those conversations will be framed And related to that is the dimension of medical professional conscience and what doctors are prepared to do what they are happy with doing And what the law will do in response to the decisions that they make But there's also the realities of how the legal process works. It's very easy for me to sit In that other place and and pontificate about what should happen There's a gulf between that and the realities of day-to-day practice for the lawyers who are supporting both sides In this case and also the judges who have to decide it And there are practical realities of the way in which things play out in that process that have to be accounted for as well So we might have a position which is ethically sound philosophically justified That doesn't necessarily mean that the law should map entirely onto that and there are plenty of areas in which the law Does not perfectly map onto ethics or philosophical positions for very good reasons But there is also the impact on the parents And us as a community by the way in which the law is framed and that is part of the concern that many of these parents had Which is they think that a signal is sent that they are disempowered That the court steps in and and steps over what they see as their private Space the space that they think is where they have authority And we need to be concerned with that. We need to think about what signal do we send to people? What impact does that signal have? These things are important. We see it in lots of judgments in medical law about the signals that we send. We see it in end of life decisions We see it in decisions about wrongful life cases that the law doesn't want to send signals that are harming And I think that's right. It needs to be mindful of the language that it uses and the implications that language has But there is here as well and this is the part where there is interesting conflict is there is a fundamental question raised by these situations About the right boundary to draw between the power of the state to involve itself in what you might consider private family decisions And where should we draw that line? How far should we want to defend that privacy? And then on the other hand how far the law should be stepping in to protect vulnerable parties Because it's important to remember that there is a vulnerable silent party in all of these cases and that is the child And the court is taking upon itself and I think rightly to protect that child So we are navigating attention there a complex tension And there are values at stake there privacy familiar protection of the family unit, but also protection of the vulnerable And in in this as well, and this is something i'll tease out a little later Is the question of how we protect plurality of values? How do we protect in a democratic Society the fact that people feel differently about these questions People have different opinions about what is right for a child in these situations And there is space for legitimate Disagreements about that that people can they can all be right in a sense about what is what is the right thing to do And so that is why it's a complex question. This is why I struggle to know precisely what I think And the other thing I wanted to talk to you about before I go into some of the arguments on either side of what we should do Is I think there's two things we should always keep in mind And when we're thinking about these cases and when we're developing our opinions about and we're holding thoughts about what should happen And one of those is the nature of parental love what it means to be a parent and to love And i'm the parent of two small boys, so I know i'm all about it I And I think parental love like michael sandell. I think it's a very particular kind of love You don't choose your children and yet almost all of us love them no matter what we don't love Contingently that isn't how parental love works. In fact, it's the opposite. It's one of the things that makes it powerful and important And and we love them with this depth and a passion that's really unmatched I think to many other things in our lives. I think parental love is primal and visceral And I think nowhere else have we seen that more evidently recently, but in garden evidence That's exactly what's going on. That's how these parents are feeling and we need to understand how they're acting in the situation Coming from that perspective and that's true And we need to respect that and we need to take care in our language and be thoughtful and sensitive in the way that we friend the laws and response however There are other people in this situation who are fighting as well who are trying desperately as well And that's the medical teams No one's ambivalent in these situations. No one doesn't care No one is thoughtless And this is really evident. I think in the comments made by anonymous staff and from great woman's streets And so here they're talking about how it's their job to stand up for charlie And what they wanted to do was give them a peaceful end. This is what they were trying to do But what they're saying here is in the end they weren't treating for charlie They weren't even doing it for his parents. They were doing it because people like donald trump and the pope Had suddenly weighed in as though they were experts on what was happening And they were being called evil that these were things that are all the time They were the ones going to the hospital and taking care of charlie And that they were having to do it when with every fiber of their being they thought it was wrong So there isn't just a family in here who is in distress who is having a difficult time who's navigating a complex situation There are other people And so we need to be mindful of that when we work on what to do So how am I going to approach this? Well, I wanted to talk to you a little bit for those of you who are non-lawyers Some of these would be familiar to some of you So I won't go into it into actually tell you how the law works a bit Because I know a lot of you are not lawyers. We won't be too technical And then I want to explain a bit more the nature of this challenge And then perhaps unusually i'm going to start with why some people don't want to shift to a harm pressure So the arguments against A defense of the orthodoxy in a sense and then I will make a bit of a case for a change And see where we get to Now one of the important things to understand about the way the law works in these situations is It conceptualized parents not just having rights doesn't speak in terms of language of rights very much But rather in terms of having parental responsibility So parents must behave dutifully and take responsibility for their children and this is enshrined in the children act It's enshrined in the UN convict on the rights of the child And we see a good statement of this from Lord Fraser in Gillick places parental rights to control a child Do not exist for the benefit of the parent They exist for the benefit of the child And they're justified only in so far as they enable the parent to perform These are her duties towards the child and towards other children The recognizing is what the balance that parents have to strike between children Now the state and the court system has a number of ways in which they can address concerns about parental decisions But fundamentally the courts will step in and can step in when that child's welfare is engaged So Lord Skarman expresses this well in Gillick when he says their paramount concern is the welfare of the child And there is a principle which limits and governs the exercise of parental rights of custody and care and control So all the things that parents have the authority to do And he says it's perfectly consistent this principle And what it is is that when the parental right has to be exercised in accordance with the welfare principle And when it isn't it can be challenged or even overbidden So this is the point at which the courts can step in and this was affirmed in God as I said So Justice Francis affirms this and says that the court has responsibility Where it needs to in the children's best interests Now the courts take the approach partly based on the Children Act And this sets out a framework by which the courts have powers to make orders That will affect parental authority on how it's exercised and within this is the possibility of taking children into care But that's not what the Children Act is entirely about it's about many things And the court can give leave to people during applications and they can then apply the welfare test and determine what orders might be made about a child And this was part of how Great Ormond Street made their application Now the Children Act does set a harm threshold, but it sets it only in the context of care orders Whether or not they will take a child out of a family essentially and and put the local authority In some sense having ongoing discretionary authority over it The other way in which the court can Make decisions in these cases or at least make orders is via what we call the inherent jurisdiction Now these are broader powers in the Children Act, but they're residual powers So where the Children Act will tell them what to do then that is what is going to going to apply Now this Jurisdiction it derives from the delegated duties of the crown which are about protecting citizens That's the point of it. It is a jurisdiction the court has to protect vulnerable people It's broad and the courts tend to exercise it with restraint and consideration They don't use this to step into situations And tell people what to do without good reason and they do it lightly with a light touch, I think Now the challenge to this is instead that this shouldn't be the fundamental that it shouldn't be just welfare That's quite low threshold for stepping in when a child's welfare is engaged Which is can be quite a small thing happening to the child for that to be true Rather if you go back to the original challenge and guard it is that instead That we should take this this stand at this threshold that's used in the Children Act in relation to care proceedings Care orders and instead applied across medical decision making And say actually parents are free unless there is this risk of significant harm Being evident from their decisions So it's an argument to increase that threshold And they use the language of the Children Act and read across for various reasons that I that I won't go into They don't they don't really concern us here because the harm threshold is one that we see elsewhere as well You don't need to take it from the Children Act If you wanted to make this argument people have made it elsewhere in other jurisdictions as well So why would people not prefer moving to that this idea that it would pull up for into us give a bit of authority to Why would you not want to do them? I think there are four key reasons why we wouldn't want to do that And I'm only giving you the reasons. I think a good reason There's lots of reasons people might say this but I these are the ones I think have quite a lot of that and one of them is it won't make any difference There's no point in making a change that won't make a difference And the reason that you might say it won't make a difference is because actually people don't bring frivolous applications and if they do the court has a range of ways in which you can decide it won't hear them It doesn't have to give a limit to hear these So rachel taylor talks about how the court can it doesn't have to hear vexatious things It doesn't have to hear things from busy bodies necessarily. It doesn't have to do that if it doesn't want to So it can decide which cases are ones in which it should legitimately involve itself and the tendency is in fact To be the ones in a series that that's why it gets involved And in fact what I'd say is in fact often they're the ones where there is harm on the table There's a possibility of harm. That's usually in fact what might be happening not always though But one thing you might say in response to that well This is this is relying on court restraint and this is the point that's made in guards in the court of appeal and also I think in the screen book By charlie's parents counsel is that this is all reliant on the courts deciding to behave that way And the law doesn't constrain them to do that but they do do it but that doesn't mean they have to do that So you can you can take your own opinion about whether or not that's a good response to that or not And he says there's almost an empirical claim really whether or not the courts will behave in a particular way And people obviously in the base about charlie god and the public had differing opinions about this at varying levels of knowledge about the process and so But the other reason is it's not necessary And it's not necessary some people say Because both the law and clinical practice already give enough respect to parental Authority and parental interests. So giles virtually who is a clinician, but also a philosopher Who's done a number of studies of the way in which clinicians make decisions and parents experience of these and so Talks about how well actually what happens is the clinicians already give lots of respect to parental issues It isn't the case The clinicians don't listen to parents and don't respect what they say quite the opposite Actually, but they work with parents as far as they can and the cases that we see Coming to courts are the point at which a long process has broken down And he see he he demonstrates this from a number of interviews that he does But it's also the case. I think that the courts respect parental authority and we can see numerous statements where they make a point of saying We we we do take seriously the role of parents the importance of parents So you might say well, there's just we already give enough respect So why would you change? And I think that's a pretty good argument actually But the third one is it doesn't actually resolve hard cases to put in place a different threshold Now part of that would be because the hard cases are already the ones that we're seeing coming in and looking looked at by a best interest Well, for instance But from a philosophical perspective one of the complete one of the objections to best interest is the idea that is vague What our best interests well best interests are essentially a weighting of different factors and a decision about which ones are weightier than others And where the balance should be strong and that is what a loss of the judicial exploration of this is about how do we do that? And it's very thoughtful But from a philosophical perspective if there is a possibility there are multiple Reasonable answers to a question and it doesn't really tell you what to do. So philosophers kind of object to this I think it's problematic in some ways And so some would argue that harm is a better threshold It's easier to make a determination about a question of harm and that that would give you a clearer line for intervention The point when harm is on the table. Harm is a possibility. That's the intervention point Now whether that's convincing or not. I think it is is is open to debate. Harm is not actually a simple concept at all What is harm at all? Is it loss of something you had already or is it being brought into the world with something that other people have but you don't have Is it being brought into the world at all? Is it loss of life? Is it pain? Is it physical or just emotional and all of these things might be clustering in there as things that might be harming And even if you could accurately define what harm was It still comes down to a weighting many many things that doctors do to us are in some sense Harming every time they perform surgery it hurts you it cuts you open you have to recover But of course it's fine It's legitimate because it is balanced and unbalanced the benefits you get from that treatment are worth it So it may not be that it would actually resolve your question at all It might just change the thing that you're debating about but it might not actually Resolve the answer as well as some of the proponents is a harm threshold think that would But the fourth really strong argument I think against moving to a significant harm threshold Is that actually it might undermine the shared decision-making process that we see So what happens at the moment is that clinicians will work with families and try to build consensus on what to do And that is done where both parties are coming to the table as people who want the best for this chart That's how it's constructed. It's on the law constructed and that's how they construct now if instead We say parents have a trumping right How will those conversations play out parents can stand on their rights? They have the declarative power And it's important not to underestimate the declarative power declarative power of rights That's why people invoke them So they have strong power and say it's my right. That's exactly what a lot of people In the public who are talking about this case are doing that's why they invoke the language of parental rights It's a trump card Now I think there is a real risk That if parents construct their role in this situation more overtly in rights and they are supported in that There is a danger that will change the way those conversation works in a way that is problematic That will lead to less good outcomes It's more likely to promote dispute as opposed to mediated development of a consensus view I think that and that's a real problem And so if changing the framing of the law led to that then that would be a good reason to resist it So now it sounds like I've convinced myself that we shouldn't move to this Now let me let me go back to my other side Why would I then be even considering why would anybody be considering this? But then there's quite a few reasons for this and one of them is it would actually reflect the current practice So it's the flip side of the won't make a difference argument So actually the argument here is it actually reflects what courts already do and it reflects what clinicians already do So in terms of clinicians giles birchley and dominick wilson's and have demonstrated And made the point that actually clinicians already give a wide degree of latitude to families And giles work demonstrates that actually it's quite a lot of the time doctors will do things that they might say are possibly not in a child's best interest But there are good reasons to do them for the family They might continue resuscitation for a little bit longer than perhaps they think is necessary because the family needs it And a lot of other things like that they might do But the point at which clinicians resist and stop Tends to be the point at which they think they've gone beyond perhaps not in the best interest and moved into the territory of harm So this is what dominick wilkinson who's a consultant neonatologist and also a philosopher He says that professionals tend to override parents or push to have them over in only at the point when they think there's a real risk of harm That's his experience of practice. And it's also his perspective from the outside as a philosopher I think interestingly jerry bridgeman who's a family lawyer Captures this in her analysis of the guard type cases when she says we should really understand these cases as instances of professional medical Medical consciences. What's really going on is these are cases where doctors have been pushed to the point where they say I do not want to do this Retolerated some latitude, but this is the line beyond what we cannot grow and that line is a bit beyond best interest So implicitly you might say there's actually a harm threshold already in operation in the clinic And you might also say that's actually the boundary that's often drawn by the courts the point of which the court intervenes So we're already partly explained, but I think it's interesting to see The way Rachel Taylor what talks about it. She says well actually what we see Is that the courts talk about reasonable parental behaviors? so baroness Wilkins Baroness Hale says there's some Williamson when she says that the state steps in to regulate the exercise of that responsibility in the interest of children And the state is not the child of the child is not the child of the state It's important that we give parents large measure of autonomy but There are limits and the limits are about when parents are not behaving reasonably That's what Taylor says. There's lots of statements that suggest that actually the point at which the courts are prepared to intervene are the points at which there is Behavioral decisions or wishes that go beyond the reasonable and lawful approaches To a child's worker that you would expect of parents I think it's really important in the context of this to think about how much latitude courts actually take I think it's really important to keep reinforcing that. So this is mr. Justice Headley in reels saying Society has to tolerate diverse standards of parenting. It's as the eccentric the barely adequate the inconsistent And it's true that some children will get Will experience disadvantage and some will flourish more. That's what happens And the what he's saying is that this is the consequences of this being fallible as parents It's not the role of the courts to step in and nanny parents on the behalf of parents but At the point which that parenting goes beyond the reasonable Taylor says that is the point at which you're stepping in So you're doing more than allowing sub optimal decisions You're actually going a bit further than that But the question to ask then is well, what is reasonable and what is it reasonable? And I would say that actually in Nelson the case is suggested the point of not reasonable is actually the point of harm Parents can be fallible parents can feed their children Fish fingers every day for a week and we'll tolerate that but we won't tolerate things That are harming that is the point at which we feel that we should step in And that is what I think a lot of the cases reflect And so this leaves the second argument Which is that actually We might want to say that we need to send a signal about the legitimate boundaries of the state intrusion into private life And this was a key aspect in guard So this is richard gordon qcd saying look really the point here is that if we have best interests as the relevant touchstone Then what will happen is the distinction between legitimate state action and the discharge of parental responsibility will disappear because anything that parents can do Can just be overruled by by the courts. They can step in to this idea that they could step in and stomp all over parents And he's saying actually we need justification before we intrude into the private sphere And something so private as a joint parental decision And that that's what we should be thinking about that should be this boundary Now lady hail responds to this in the supreme court in guard and she says well actually yes She recognizes that article eight could apply her relation to a family Private rights, but she says that always and we know this from the structural jurisprudence that will always Be resolved in favor of the child. So even if parents have rights and we should protect that privacy We should still resolve it in favor of the children Now I think the problem is that doesn't still give you an answer doesn't give you an answer to where that boundary is And I think that's a live question. It's one that we should talk about when we come to questions We know we need a boundary, but where should that lie? I think is a question to which we need to give attention Now this is the pointy which I want to talk to a bit about some of the philosophical and ethical perspectives on this boundary And why we might think about giving respect and value to parental autonomy And drawing a little bit more typing Now one of those is is the idea that actually there is value in respecting parental autonomy So part of the argument in God and those generally in favor of moving to a harm threshold is the idea that There should be both priority and protection for the privileged position of the parent That the parent is in a special position in relation to the child Now it's not just because they are a parent. It's not just that that does it But it is the fact that very often the parent will know the child best They know them intimately. They are well placed to know what that child's subjective preferences would be Or to extrapolate what they might be if their child were capable of expressing preferences And they're also best placed potentially to understand the balance that needs to be struck within a family So to situate that child's needs within its wider context within a family unit And that these are important dimensions of parental autonomy that need to be given respect And there's also the fact that parents are deeply committed to achieving the best for their child They are on the child's team in a sense, always And these are valuable things But I think a more important aspect of this is the idea that parents need space in which to parent They need to be able to make decisions And they need to feel supported and respected in doing that rather than policed This is what's important about the law sending a message that we respect parental autonomy If people get better at expressing autonomy and acting on it when they're allowed to do it That's what being a teenager is about, is like taking off the training was a slowly getting better and making mistakes This is what Mill talks about, is we become more autonomous and better at that when we practice So then there's a number of sides to that It's also impossible to police parental parenting too much But that's why the law draws particular boundaries, it involves itself in some decisions and it stays out And it involves itself in education and child protection in the face of serious harm But it stays out in terms of what you feed your children for breakfast Because it can't deal with it and also it allows for differences in you Now sometimes people say, well actually the simple thing would just be to move to harm pressure because it's consistent with the children act on care proceedings And I think that's a really weak argument Consistency for the sake of consistency is not a good way to approach things and that's precisely because The reasons that we have that high threshold in the children act are very very good reasons because of the implications of those orders But instead we should think about this in terms of the logic of the harm threshold in relation to medical decisions And be thinking about this parental autonomy aspect So why would it be good to respect parental autonomy in these places? Well, I'll tell you why I think that might be the case It's because lots of the decisions that people have to make about medical care aren't actually medical decisions They are decisions about value They aren't decisions where you need more information as a medic They don't tend to be of that kind in some cases They are in fact decisions about how to live a good life, how to flourish So a trade-off between staying lucid to say goodbye to your family And having a death that is free from pain That isn't a medical question. That is a question about how you want to end your life. What is valuable to you? It's not a medical decision Whether certain risks are worth certain disbenefits So it's not a medical question about whether or not a small chance of recovery is worth the unpleasantness of chemotherapy That's a question of value about how you want to live your life and the sorts of risks that you want to run For the particular costs that they carry And these are exactly the sorts of decisions we partly see You could construct garden that way if the facts are slightly different I wouldn't see garden that way, but many people did see gardeners give him this tiny chance even if it's a bit harming Now there's factual concerns about that that we don't need to go into But if that were the case if there had been a tiny chance and some harm that might attend to It would have been a question partly about value as opposed to medical knowledge Now that leads you to think who then is best to make a value decision for a child And the legitimate answer is parents if it's a value question Why is a doctor or a court someone external to the situation doesn't know this are a better place than a parent And this I think is a stronger argument for the hard questions Is that of all the people who might make a decision about value here The parent is as well placed if not better placed to make that kind of decision but The other side to this is And we can see this in the way in which the situations play out is that parents are compromised in the situations They are desperately silent and they are desperate And I think we can understand particularly Garber also Evans as situations in which parents are being offered hope And we might think that that is problematic But they are themselves vulnerable and Jonathan herring has written Elequently about this that we should understand the parents in these situations as vulnerable parties as well That is absolutely. I think they're experienced And so that might be a reason there to actually step in Because we might feel that we might have thought that parents can make a good value decision But sometimes that may not be true of some parents in some situations And so that's why I think one goes back and forth thinking what is best Because there are as I said at the start so many perspectives and so many complexities And the final argument that's often for and I also find this one quite convincing is the idea of value pluralism That in a democracy we need to respect the fact that people can have different views about value They can understand it in different ways and take different positions on it And the way we tolerate that and the way we respect difference is allowing for people to make different decisions about these things So now I feel like I've almost convinced myself to move to the next session So I'm going to get back to the science We're going to finish on my on my conflict and I'm going to tell you the two arguments that I the three arguments Actually that I do feel might be compelling But these are the arguments on which I feel the least able to have an authoritative opinion But there'll be people in the room who I genuinely think are better able to weigh in on these and I'm very interested to say And these are the particulars that give me pause. They're also I think partly empirical points And they rest on what will a change actually do in practice So one of these is three of them one of them is the impact on the way in which these situations will be managed If we move from a system Which is emphasising working out what is best for a child and building consensus And instead move to a situation where The court has to take a position on whether or not it is permitted to override a parental decision because those parents have crossed this harm pressure That will become the inquiry and that is a very different inquiry To has this child's welfare been engaged and what is best for that child? But in particular Katie Glossop and Sarah Pope make the point That it would also alter the way in which both hospitals and legal teams will have to approach these cases So instead of having an inquisitorial process essay where everybody is working to work out what is best for this child At some point it will turn into an adversarial one. They say That once a conflict deepens that in fact they will have to begin instead of working towards consensus They will instead have to begin building the case for overriding the wishes of the parents And we see this we've seen it in cases like we um, we are That instead they will begin to have to build the evidence They're going to need to go support and say these parents are doing something that will be harming and they need to be overridden That will be an important change And they they rightly say that this may be harmful. It might be stigmatizing perhaps even more problematically It will see people's positions harden earlier And dialogue with more difficult mediation will be less effective That people will dig into their positions and that is counterproductive And I think that's a very valid argument But it is also an empirical claim about the ways in which these things will play out In in reality There's also the question about Though with this whether or not it might be better to do that Should we actually be taking this push back at parents and saying what you're doing isn't just not in their best interest We're going to demonstrate that it is harming. So please back down Now you might say that might be better. It might be better for parents to be told a stronger harsher truth But this leads to my other my second point, which is we need to think about the ways in which These this change in practice would affect how parents behave So Glossom and Pope make the the very valid point that actually if you knew as a parent That if you made decisions that might be constructed as harming that it might actually change what you say you're happy with So you might be concerned that your decisions are going to be constructed this way So instead you might avoid disagreeing might acquiesce when you might have wanted to actually push back a little bit For fear that your resistance might be used against you and and we are is a good example of what that actually does to some degree happen A case was built against the mother because she had resisted some some treatment decisions And I think it would be a very sad and deep irony if in fact we move to an approach Where the very steps that parents had wanted To give them greater power actually Left them more disempowered Because the implications were that they couldn't decide as I had as they would have otherwise decided to fear that their resistance would be built as in fact They'd be used against them to construct it as far so I think we need to think very carefully about that And my final thing that gives me pause Is what are the impacts on parents feelings? So at the moment what happens is the parents are told what you wanted wasn't in this child's best interest That's what was said essentially a guard And if you if you read connie eight statements about this you can see that she's really it's hurt her To be told this because she is absolutely convinced that that is not true And yet the message that comes back to us you have chosen a course you want a thing that is not best for your child It's exactly what she believes is not true But imagine instead if you weren't simply told what you want isn't best, but instead you're told What do you want to do will put your child at risk of significant harm? I think that is a different statement to make To parents and it won't just be made in the short term. It is made over the course Of a court case. That's that's what's happening here. Um, and I think glossop and pope I think do a really good job and they say it's bad enough to have a court finding what you wanted For your child was not on your child's best interest. It's worse to have a court finding that you caused your child's significant harm And rachel taylor, I think rightly says this will be terribly cruel. This is potentially terribly cruel thing to say to parents And again, I think that's that's a an ironic flip side to the thing that parents like charlie god's parents want Is it may actually harm other parents when it goes against them? And I think it's important that we we notice That the words we use actually make a real difference in these cases So we shouldn't lightly brush off the fact that we might actually harm some parents who move towards us Okay, so i'm going to wind up and then we can have some questions. So what's my conclusion? Well, I think that harm threshold is probably more philosophically justified than I think that it is the right position from that perspective I think it does reflect actual practice And I think it probably is the way actually these cases these are the sorts of cases that are coming Are really ones about harm And I think a harm threshold would actually strike a more appropriate balance be more reflective of where we think the line really leads to line I don't think rights talk is helpful. I don't think constructing those parental rights is a good way to look at this I think it deepens people's harder positions And I think we need to think really seriously about the fact that these are value decisions and therefore we want to respect plurality of violence but I think if there is any any real risk that this will be counterproductive in practice Then those reasons have to fall away those arguments have to yield to the fact that at the end of the day what we're trying to do here Is to strike a position that is clear Just by but also gets to the best outcomes and when we do that we need to listen to doctors Medical practitioners are very kind parents the courts league person. We need to listen to everybody out What will really happen if we do this? And when we make our decision we have to do we have to reach one that achieves the best outcome for the child Because there is a child at the heart of all of these cases And that child is of everyone the one who here is the most affected But they're also the person whose voice is the only one that can't be heard And I think we need to take very serious account of that and we need to decide what to do Thank you