Ep59: Essential Ethics in Paediatrics

Ep59: Essential Ethics in Paediatrics
Date:
15 June 2020
Category:

Fellows of the RACP can claim CPD credits via MyCPD for listening to this episode and reading the resources below.

The ethical questions that come up in paediatrics can appear overwhelming to begin with. When can a child be said to have cognitive capacity and bodily autonomy? For those who don’t, where does the guardianship of the parent to give way to that of the medical professionals? When might treating one child have implications for the resources available to others? And what about not treating or vaccinating a child, if that’s what the parents want?

All of these issues are tackled in the Essential Ethics podcast, produced within the Children's Bioethics Centre at the Royal Children’s Hospital, Melbourne. The Centre was established to promote the rights of young patients and to support families and clinicians facing some vexing ethical questions. The Essential Ethics podcast takes a case-based approach to demonstrate how dilemmas in clinical ethics can be worked through in a systematic way. A couple of these are presented here as part of the RACP Congress digital program.

In the first story discussed, a child with autism spectrum disorder is suspected of having COVID-19, but the mother refuses testing as it will distress him for little gain. The second, real life case, is that of a 16 month old boy born with a developmental abnormality of the lower leg. In the most severe cases the recommended clinical management involves amputation, but this boy’s deformity can be corrected through a number of involved surgeries. Orthopaedic surgeon Chris Harris describes the confronting course he had to take. He is interviewed by paediatric respiratory physician John Massie and clinical ethicist Lynn Gillam. They are respectively the Clinical Lead and Academic Director of the Children's Bioethics Centre, and both have Professorial appointments at the University of Melbourne.

Credits

Guests
Prof Lynn Gillam (Academic Director, Children’s Bioethics Centre, University of Melbourne)
Prof John Massie FRACP (Royal Children’s Hospital Melbourne, University of Melbourne)
Dr Chris Harris FRACS (Royal Children’s Hospital Melbourne)

Production
Written and produced by Mic Cavazzini. Music courtesy of Free Music Archive includes ‘Vodka’ by Transient, ‘Linger’ by David Szesztay and ‘Celeste’ by Adam Fitch. Image licenced from Shutterstock

Editorial feedback for this episode was kindly provided by members of the RACP’s Podcast Editorial Group; Saion Chaterjee, Jenae Valk, Michael Herd, Phillipa Wormald and Lisa Mounsey.

References

Podcasts
Essential Ethics Podcast [RCH]
Ask the Specialist [Menzies School of Health Research]
(Ask the Specialist is a podcast for health professionals who work with Aboriginal patients. Leaders from the Larrakia, Tiwi and Yolngu people respond to questions from doctors at Royal Darwin Hospital. The podcast is part of the “Communicate” study at Menzies School of Health Research).
RACP Congress 2020 Digital Program

Literature 
Clinical Ethics Service [RCH]
When Parents and Doctors Disagree [Federation Press]
Too close to the knives: Children's rights, Parental authority, and Best interests in the context of Pediatric Surgeriesv [Kennedy Institute of Ethics]
Ethical dilemmas for pediatric surgical patients [Anesthesiology Clinics of North America]
Please amputate my child's arms [Hastings Center Report] 
A comparison of functional outcome between amputation and extension prosthesis in the treatment of congenital absence of the fibula with severe limb deformity. Journal of children's orthopaedics [Journal of Children’s Orthopaedics]
Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality [Johns Hopkins University Press]
Adolescent autonomy revisited: clinicians need clearer guidance [J Med Ethics 2016] 
Decision-making in the adolescent brain [Nature Neuroscience] 
Fibular Hemimelia: Comparison of Outcome Measurments After Amputation and Lengthening [Journal of Bone and Joint Surgery] Comment: Limb-lengthening versus amputation for fibular hemimelia
Amputation Versus Staged Reconstruction for Severe Fibular Hemimelia: Assessment of Psychosocial and Quality-of-Life Status and Physical Functioning in Childhood [Journal of Bone and Joint Surgery]

Transcript

MIC CAVAZZINI:               Welcome to Pomegranate Health. A podcast about the culture of medicine. I’m Mic Cavazzini, for the Royal Australasian College of Physicians.

The College was, in May, supposed to host its annual Congress. Of course, the global COVID-19 pandemic put a spanner in the works. But rather than let cancel the event entirely, we’ve translated as much of the program as we could to be delivered online. Most of the plenary lectures are being recorded, and there are webinars you can participate in scheduled all the way through to September. Just visit racpcongress.com.au for more details.

One of the discussion sessions in the original program was to be chaired directors of the Children's Bioethics Centre in Melbourne. The Centre was established at Royal Children’s Hospital to promote the rights of young patients and to support families and clinicians facing some vexing ethical questions.

When can a child be said to have capacity to make autonomous decisions about their body? For those who don’t, where should guardianship of a carer give way to that of medical professionals? And what if it’s not the child’s health at stake but that of the community- as is the case when parents might refuse testing or prophylaxis for an infectious disease.

All of these issues are tackled in the Essential Ethics podcast, hosted by paediatric respiratory physician John Massie and clinical ethicist Lynn Gillam. They are respectively the Clinical Lead and Academic Director of the Children's Bioethics Centre, and both also have Professorial appointments at the University of Melbourne.

The Essential Ethics podcast takes a case-based approach to demonstrate how problems in clinical ethics can be worked through in a systematic way. I’ve trimmed down a couple of episodes to share with you here—so let me hand over to Professor Massie as he introduces a fictional but very timely case-study.

JOHN MASSIE:   Lynn, there's a lot of information out there about coronavirus and about the importance of testing. What I'd like to do is present a scenario, and typical for clinical ethics it's a bit messy. So this is a five year old boy who's brought to the emergency department with a high fever, lethargy, cough and breathing difficulties. And in the current era one might reasonably expect that this could be coronavirus. There's no contact with a COVID-19 case or recent overseas travel. The boy has moderately severe autistic spectrum disorder which is associated with a fear of medical procedures. His mother refuses a nasal and throat swab on the basis that it will severely upset him and set his ASD treatment back. So I guess the question to you is it acceptable to accede to mother's wishes and not to do a COVID swab?

LYNN GILLAM:   So it's a puzzle, isn't it, because we're used to thinking about people wanting testing. Let's start with first principles. Parents have the right to be the decision-makers for their child, and in society we essentially allow parents a very wide scope for making decisions about their children's wellbeing – about what activities they allow them to do, what sport they participate in, and so on. And in the healthcare arena likewise we allow parents a very – well this is our question isn't it – do we allow parents a very wide latitude or once the family walks into the hospital is the family now, the parents now, obliged to do exactly what they're told by the doctor and they get no choice?

So the way that we typically think about this is to think in terms of where are the limits to what decisions parents can make for their child? And we set the limits essentially at the point where the parent's decision seems to be likely to be significantly harmful to the child. So in ethical terms we call that the 'zone of parental discretion' and this is, I guess, a protected space where we say it's OK for parents to make a decision that might not be perfect for their child, it might be suboptimal in some way. But provided it's not harmful it's OK – we can go with that, we can tolerate it even if it's not what the doctor thinks is best, or even if it's not what the doctor would choose for their own child. We let parents make a whole range of decisions.

The point of intervening is the point at which carrying out the parent's decision would actually be harmful to the child. So in this situation, if we're thinking about the child, to begin with, the nasal swab is not pleasant. I haven't had one, I've spoken to some people who have – I know that it brings tears to your eyes and that's a sign that you've got the swab in the right place. So it is an unpleasant procedure. Is that right?

JOHN MASSIE:   Yeah, it goes deep into the nose and then into the back of the throat. And an older child or adult will put up with it, and they might put up with it partly because they want to know. So people are fearful of having COVID, people are very fearful of giving it to other people. And so they'll trade off the discomfort versus the value to them of knowing.

LYNN GILLAM:   Yeah. But here we've got a young child with autism spectrum disorder who probably doesn't have that sense of why it's being done, so the capacity to put up with it for that reason is probably less. Also in relation to his autism spectrum disorder it's easy to imagine him getting much more distressed than another five year old would. So his mother's position seems very reasonable on the face of it. So the other harm question to think about is whether we actually need a COVID-19 test result in order to provide best care for this child.

JOHN MASSIE:   And I think that at the moment, as described this is a child in the emergency department that if he required admission to hospital who might need oxygen and that low flow nasal oxygen seems to have been for the vast majority of children around the world who've become sick with COVID, that's the level of therapy. And if we knew he had coronavirus would we give him particular antiviral? The answer is no – there isn't anything beyond supportive care.

LYNN GILLAM:   So I think I'm hearing you say that it wouldn't make any difference to his management in hospital whether we knew he had coronavirus or not. His respiratory symptoms would be managed.

JOHN MASSIE:   His illness, for this individual, the answer is no.

LYNN GILLAM:   OK. So that suggests that this child doesn't gain anything personally out of being tested and you can see that there are losses for the child in the discomfort, the distress, and to the extent that that's going to have an impact on his fear of hospitals and procedures and capacity to cope with medical care in the future. There's lots of reasons to not do it.

OK, so now we're in the pandemic situation. So we would actually be wanting to test this child really for the sake of other people, not for the sake of the child. So that's what we're balancing – is the risk to other people bad enough that it would justify going against the parent's very reasonable assessment that it would actually be worse for her child to have a test in order to protect staff? So again, contextual John, this is a contextual question.

JOHN MASSIE:   And Lynn if you ever – listeners can hear the rustling, and I think that that's Immanuel Kant turning in his grave because we're sort of proposing using one person as a means to another's end aren't we? Which is always bad ethics. Is that what we're talking about

LYNN GILLAM:   Yes, that's – you can feel that angst I think in my voice – it's certainly going on in my mind. We shouldn't treat one person as a tool to help other people. And the only thing that makes it OK to do things like that is the consent or agreement of the person who's being used. So if I agree to be tested for the sake of other people – absolutely fine, because I agree. But we've got a five year old who can't agree. The person who would agree on his behalf is saying no because it would be in many ways detrimental to him and we can probably agree with that assessment. So it's worrying.

JOHN MASSIE:   It is worrying, but I'm going to drop some other names for you – I'm a shameless name-dropper, and you'll know who perhaps – who's articulated this: Locke or Hobbes or Mill. Because you've got personal liberty – personal liberty to do what you want up until the point it's harming others.

LYNN GILLAM:   Yes.

JOHN MASSIE:   So where does that fit now?

LYNN GILLAM:   Yes we have to take that into account. So how much harm to others would it cause if this child doesn't get a test? It certainly causes I guess inconvenience of having to wear full protective gear, which you wouldn't otherwise do. It probably makes managing things in the hospital harder, takes more time. Now inconvenience is probably not enough I think to limit this mother and child's freedom to not have the test. What really matters then is whether that inconvenience also involves using up personal protective equipment and time which is actually needed for other patients or needed broadly speaking for the health care system to protect staff. So I think that the key thing that matters here is how scarce our resources of personal protective equipment are.

JOHN MASSIE:   So at the moment we're at a situation, Lynn, where the degree of PPE use, so we'd have to treat him as if he was test positive even if he wasn't. But I'm just going to dial the sensitivity analysis up a little bit. He's got sicker, needs to go to the intensive care, may need some respiratory support. So non-invasive or invasive ventilation risk aerosolization more. Potentially knowing if it's COVID or if it's perhaps influenza at this point might benefit him because we might use an influenza antiviral.

LYNN GILLAM:   OK so this situation seems potentially ethically different in two ways. One is you're now saying that there might actually be some benefit to him in knowing. So that gives us more of a reason to test for his sake. Also intensive care is a particularly limited resource and I imagine that use of PPE in intensive care setting is also potentially a limited resource, so we might have also more reason in terms of protecting others from harm. I'm already thinking there's more compelling reason to test him now and if he's sick enough to be in intensive care he's probably already sedated or he could be sedated so we could make the experience less unpleasant for him. Is that possible? That would make me feel a lot better about it.

JOHN MASSIE:   Yeah, I mean I think the sicker he is then you're right, if he was intubated then he would be sedated and you'd be able to do your test. So I just – I think the first situation in the emergency department perhaps even coming in for a day might sit within the zone of parental discretion, that it's OK not to do the test – accede to the parent's wishes, even though we might prefer to do so. But if he gets sicker then that becomes more nuanced – he has capacity to benefit, there's greater risk to staff – could we override parental request not to in that situation?

LYNN GILLAM:   Yes in the end I think we could. Either on the basis that the parent's refusal of testing has now got to a situation where it is causing harm to this child, because there's something we need to know that we can't find out, or because it's posing too much risk to other people. So either of those grounds would potentially cover it. ***

MIC CAVAZZINI:               As Professors Gillam and Massie have described, consulting a clinical ethicist can help physicians work through these dilemmas with a consistent framework. This allows the child and parents to feel their choices have been respected, and clinicians can remain confident they are fulfilling their role as advocates for the child's best interests.

The next case study raises the stakes to a level that might be shocking at first. This is a true story that’s been shared with the blessing of the child’s parents. Baby J is a 16 month old boy who was born with a developmental abnormality of the lower leg called fibular hemimelia. In this condition, not only is the fibula shortened, but the foot and ankle will be malformed.

In the most severe cases where mobility is greatly impaired , the recommended clinical management involves amputation. The earlier this happens, the more opportunity a child has to adapt to a prosthesis. Baby J had a more moderate grade of deformity which could be corrected, but only with a number of involved surgeries over his childhood. I’ll let baby J’s surgeon describe the confronting course he was asked to take. Chris Harris is an orthopaedic consultant at Royal Children’s Hospital, and he’s hosted by John Massie and Lynn Gillam who you’ve already heard from.

CHRIS HARRIS:  In the past, length was a challenge to orthopaedic surgeons but is not such a big challenge anymore. So in fibular hemimelia whilst the leg is short and the treatment for it typically involves lengthening, the key thing before you do any of that is to ask a question: is the fact you might not have the right shaped heel or so many toes or part of the foot not there, is it ever going to work as a foot and ankle? And so as orthopaedic surgeons when we meet this children one of our first assessments is do we think the child is better without their foot and ankle? In which case we'd do an amputation to remove it, and prosthetic fitting. Or are they better with it, where we'd go down a line of reconstruction? So correcting deformity, lengthening. And that's quite a big journey – it's a number of operations, it's not an easy journey.

And between the terrible foot that everyone would agree should go and the perfect foot and ankle that no one would ever suggest amputation, somewhere between those two there is a line. And every surgeon's got a slightly different place for that line. And our biggest challenge is normally when we've got a child with a foot and ankle that are not great and we feel they should have an amputation. Our biggest challenge is when the family say: "No, we don't really want an amputation". Whereas in this particular case it was the opposite way around, and for me this was a foot to keep. So we'd taken the parents down the route of reconstruction and they were saying, "Actually we want an amputation" – and that really challenged lots about how I make decisions and what values I have. And at that stage that's where we approached Lynn.

JOHN MASSIE:   How did you feel when the mother of this child said do an amputation?

CHRIS HARRIS:  As surgeons we're very used to parents not necessarily agreeing with us, but in one direction. Normally the foot that we think is really never going to work well as a foot, that we're thinking right from the beginning probably the child would be better without this foot and with a prosthesis, we're going to sow the seed of, “this is our dilemma, this is what we think, and maybe this foot is not good”. And then as we get to know the family we'll explore some of that and try and lead them I suppose down this pathway that we feel is the right treatment. This case was interesting because their initial journey was not really how we would normally do things.

So in this particular case the child had come to a different team, and they'd treated the foot like we would treat club foot, a congenital talipes equinovarus, with casting. And as part of that casting the patient had been sent for making an AFO, a plastic splint, and it happened that the orthotist who was making that splint was also a prosthetist, had got this understanding that we had sent them along to talk about whether an amputation. So really the amputation side came about not from us but it came through another route. And in fairness to the orthotist, the prosthetist, they see these children so good, so functional with an amputation and a prosthesis that to them they look at it and say, "Well why would you reconstruct – go down this big complex journey when these patients can be so good" Whereas we look at it the other way around: why would you amputate when you can save the foot?

JOHN MASSIE:   What does the other side look like though in terms of the reconstruction, because that's not a single event is it?

CHRIS HARRIS:  No. So I mentioned earlier that there's a scale and it really depends initially on what is the position of the foot and ankle. So that would be some form of operation to correct the position of the foot and ankle, and typically, but not always, it would involve a frame – an Ilizarov frame, a circular frame, around the leg. And then having got all that good you would be looking at doing lengthening and typically that is also within an Ilizarov frame. And when you do lengthening the child is going to be in the frame for months – three, four months or so. And so it's a big journey for the family.

JOHN MASSIE:   And so that frame I think, for people who aren't familiar, sits outside the leg with spikes essentially going into the leg.

CHRIS HARRIS:  Yes, wires that skewer through the soft tissues into the bone to hold it.

JOHN MASSIE:   It looks rather unpleasant. And how many times – because a kid's going to grow – so how many times are they going to have this sort of surgery before you can stop and say, “Well your leg's good enough?”

CHRIS HARRIS:  Yeah, it depends John on the severity of the shortness. So some – in the simplest types of people with hemimelia where you're going to do a lengthening they may only have one done, and that may come at any age – five, six, onwards. But for others with the more difficult types, three, four operations, and all that goes along with that. Not just an operation where you do it and you wake up and it's all done, but an operation where the treatment is ongoing for weeks or months with a frame or some sort of splintage or some device like that.

JOHN MASSIE:   My understanding was that it was around 15 or 18 months that the family were pushing for the amputation.

CHRIS HARRIS:  Yeah, before then. But we – in a sense, where you have the clock ticking, for us is not too bad until the child is at walking age. And even with these foot deformities they can still walk. But we like to – if we're going to do an amputation we like to do it under the age of two roughly, because we don't want the child to remember any of it.

JOHN MASSIE:   So the clock's ticking, two is your cut off for that idea of the child integrating their leg into themselves and personality, and having some prosthesis to be functional. So it looks like Chris clinically we're weighing up hopefully a single surgery for a good amputation, and perhaps multiple prosthetic fittings over the years as the child grows.

CHRIS HARRIS:  Definitely multiple prostheses.

JOHN MASSIE:   Versus potentially multiple operations going through into the teens for this baby.

CHRIS HARRIS:  Yeah. And the other thing, and that the parents made the point in this case, and they were very clear about this, is that despite doing all this, it’s never a normal foot and ankle. So any of the surgery still doesn't give the child five toes – still only got three toes. And you could argue that there is a cosmetic side to that, there's an acceptability side. So in society what is seen as more acceptable – the child with the prosthetic leg or the child with two or three toes? And so the parents also came from that perspective.

JOHN MASSIE:   It's sounding like that these are together, intelligent, thoughtful and well-read and knowledgeable in terms of their capacity to make this request or make this decision. Would that – that's a fair assessment?

CHRIS HARRIS:  Yes, definitely.

JOHN MASSIE:   So Lynn this is a conundrum because I think people feel very strongly in lots of directions. One perhaps about function, but other people about: we do everything we can to save a leg. And that's what we as doctors, but I think people in the community might think as well. So how did you approach this, or how do you feel about this?

LYNN GILLAM:   So yes it is a conundrum in many ways John, and there is a strong instinctive view for everybody to think amputation is a terrible thing, and that’s the thing most to be avoided. So it's surprising when parents or anybody would in fact want an imputation. Then the – I think there's another strong feeling around the extent to which it should be the parents say. So one possible view is that these parents are bringing up this child and they need to be the ones to make the call. But others might say, “Well parents shouldn't interfere with a child's body to that extent if it's avoidable.” So there's a number of strong and different positions.

JOHN MASSIE:   So what then is in the tool kit, if you like, from the ethicist? Chris has got a large box of hammers and swords and screwdrivers, but we also have a set of tools in our toolbox. So how did you start diving in to this and trying to tease it out and come to a balanced decision?

LYNN GILLAM:   So I think the two main tools to pull out which we would often pull out from our ethics toolbox are the idea of the zone of parental discretion and the concept of the child's interests, and trying to promote the child's interests. So if we use that idea in this context it seems to me quite clearly that a decision for amputation or a decision for reconstructive surgery would in fact fall within the zone of parental discretion. And it's entirely possible for reasonable people I think to have a different view about some of the things Chris has been talking about. The importance of functioning – so if this child goes down the reconstructive pathway, if I've understood correctly Chris, he would as an adult be able to walk but quite possible not able to run.

CHRIS HARRIS:  Yeah, to variable amounts. And that's a good point – how much could he participate in sports? That is one component, yeah.

LYNN GILLAM:   Whereas if he has an amputation and a prosthesis it's entirely possible that he could be up and running.

CHRIS HARRIS:  Yeah, and we've seen that in the Paralympics, particularly fibular hemimelia, they are incredibly highly functioning. Of course prosthetic-dependent, but in that prosthesis incredibly highly functioning.

JOHN MASSIE:   So we're thinking that in some ways the person we're responsible to becomes the child as an adolescent or a young man and that they're happy with the decision that was made for them.

LYNN GILLAM:   I think that’s a really important point John that both the surgeon and the parents are in the position of making a decision for somebody else. And a decision needs to be made because this little boy, less than two years old, can't make a decision for himself. And so the one who really matters is that child and later adult that the child will become. And we've got to think about the child as a child, during his childhood, but also during his adulthood. So it's an awfully long timeframe to be thinking about. And there's really almost incommensurable things like function, appearance, body image, self-esteem, sense of bodily integrity – all of those things are in the mix and it's really hard to compare them and to weigh them against each other. So in some ways it seems to me this is the classic example of the type of decision that's within the zone of parental discretion.

JOHN MASSIE:   Chris I'm sure as an orthopaedic surgeon you have to make some big calls. You've perhaps chosen the speciality because of your ability to make decisions and make the right one. How does this sit with you, the zone of parental discretion, and you're letting somebody else make the decision?

CHRIS HARRIS:  It wasn't a concept I'd really come across till I spoke to Lynn, and I suppose in orthopaedics we are interested – we look at outliers. So is this coming across to us as weird or strange? That normally when we sit down with the parents they would understand, they would get it, that we want to keep the leg. And so when you see someone who isn't like that you start thinking, “Well are these parents, if they're outliers, why? And can we trust their ability to make that decision?” But then they're the child's parents.

In orthopaedics I suppose we see ourselves a little bit as the protector of the child as well. But maybe not in a pure way because we're used to getting our way. So we believe our way is the way that protects the child, but that's not necessarily right. And so when you see this conflict it challenges both of those things – these parents, are they really in touch reality or is the doctor in touch with the reality? That's what that challenges you in.

I think one of the challenges is that the parents somewhere maybe need to feel validated in their decision-making. So it works brilliantly where the doctor and the parents are in-line with each other because the parents validate the doctor, the doctor validates the parents' decision. We all go into it together, hand in hand, feeling, “Hey we're doing a really good thing today.” The challenge is when the two – when you don't feel validated. So you still feel that this is the right thing to do but you feel unsupported in it, you're on your own. And that's not such a good place to feel.

JOHN MASSIE:   One of the concepts a chap called Joel Feinberg discussed was the sort of sense of an open future, and maybe that's where that middle ground of not doing anything too definitive now comes in. Is that a concept Lynn that you think could be helpful in this case?

LYNN GILLAM:   So the idea of a child's right to an open future is a very powerful idea and I think it's often a very important idea that helps you make a decision. So the idea is that the role of parents and in fact anybody who's taking care of a child, is to leave the child's future open to be whatever the child wants it to be, as far as possible. And that sounds like a fantastic idea and insofar as that's possible to achieve it's very worthwhile to achieve.

The difficulty is that in many situations, and this is one of them, making a decision that tries to keep open the future is not so easy to do because for example a decision to wait to see what the child wants, and you might be waiting quite a long time, has its own consequences. So that child is going to still have those years of waiting to see, whatever waiting to see would look like. And often it's the case that as you wait you might even be closing off avenues that you could have taken – it's not always so easy to go back to the starting point so to speak. Chris you might want to say a little bit more about what would be the implications of waiting and doing nothing – is that even possible?

CHRIS HARRIS:  The challenge I suppose in waiting is that there are negative aspects to the child starting childcare and then all that. And then it wasn't just about that but it was about dad was going to work interstate, mum would be with the child on her own – it was all these, all complexities feeding in to the situation. So to try and separate it into one pure decision like the child's childhood it's about more than the child. It was about – the parents actually said to me, "It's about the family's future". They said, "It's not just about the child, it's about our family and how we relate and how we face life together as a family unit". And that was another very interesting thing. And all credit to the parents, they were very switched on about these things. They just presented concepts that we don't normally have to face.

JOHN MASSIE:   Lynn are you comfortable that Chris is describing something that we often trumpet here at Royal Children's, is family-centred care, but sometimes the child's left behind while the needs of the parents are met.

LYNN GILLAM:   So family-centred care sounds fantastic and often is, but it has some hidden complications. What I heard Chris describing there was quite I think a sophisticated understanding of what family centred care is about. So for the child who's under your care Chris, that child's interests matter and you might even say that's the primary thing that matters. But we know that the extent to which that child's life will go well depends a lot on the parents. So the family are in it together in that sense – these parents will have to bring up this child, help him make what his life is going to be. If they're committed to an amputation pathway and they want to make that good life for him, that’s going to make a big different to his life. If they were committed to the reconstructive pathway and wanted to make that good life for him, that would also make a difference. It does seem a problem to put parents on a pathway that they're not committed to when it's going to be them who has to make this a good life for the child, particularly when they're young.

JOHN MASSIE:   That's a really important point, Lynn. Chris you were hinting though at something in that, in amongst the family-centred care, about the childhood. Because a lot of people would think well childhood, it's about going to school, it's about preparing yourself for your adult life. And so you might embark on reconstruction to get yourself ready for your adult life, but what about the childhood? So does that influence you?

CHRIS HARRIS:  Yeah it's a good point John because we are doing something by doing surgery, say we're doing reconstruction, with a view to their future life. But at the same time life is about the now – each one of us lives in the now don't we? And so by doing stuff you rob some of that now for the child, when you put the child in plaster or put them in a frame, or put them in hospital. You take some of that now when they don't go to school or don't interact. Or add to that the stress you add to the family, that robs them of some of their now. And so they will lose some childhood they will never get back again. So as surgeons, and I expect all doctors, but particularly surgeons, we're very keen particularly with conditions that require repeated surgeries, to try and minimise our robbing – what we perceive as robbing – their childhood, because they will not ever get it again.

JOHN MASSIE:   Chris how did you feel though on the day doing the surgery knowing that you were aligned with good sense with the parents' wishes supported by your colleagues in ethics – did you feel happy going into theatre that day?

CHRIS HARRIS:  I did John. I think I still had this slight struggle, a battle going on inside about the two sides of the argument. But in many ways that argument had already been had. We have a weekly case conference meeting in our department where all our team would get together and we brought the family to the case conference, we invited Lynn. And for me that was really important because it allowed me to bring this dilemma that I had, that I was struggling with, into the group of my colleagues, and let them share it. And then they could either stand with me or they could say, “Chris, no don't do this – we'll stand with you either way.” But that was really useful for me, because at the end of the day I am the one that carries out the amputation. So that's another thing that as a surgeon you want to come to work knowing that you – you want to drive into work knowing that you're about to do something really great, something you're really going to be pleased with and look back as, “I've just done a great thing.”

I think you still – the challenge is that we as surgeons, we see ourselves as re-constructors – people who take something that's not good and make it better, particularly in orthopaedics. Because we fix broken stuff, that's what we do – we make broken stuff good, or the body actually makes it good but to try and understand that concept that by doing something that physically seems destructive, I'm being constructive—that's the thing. And I'm understanding that. And so we had a really good session and from that I felt: yes, we can proceed and do the amputation. We did the amputation, the child is highly functional, the family are happy with their decision. They've stayed happy with their decision. And as one would expect he's just tearing around with his prosthetic leg. So, so far and hopefully for good, it seems a happy ending.

MIC CAVAZZINI:               That was Chris Harris ending this episode of Pomegranate Health. Many thanks to Lynn Gillam and John Massie for letting me share the Essential Ethics podcast with you. Its production is made possible by Friends of the Children’s Bioethics Centre Auxiliary.

You can subscribe to it just by searching for Essential Ethics in any podcast aggregator app, but it can also be streamed from the website of the Royal Children’s Hospital, Melbourne.

Go to rch.org.au/bioethics You’ll find guidelines on the law and ethics around informed consent, and decisions about life sustaining treatment. There’s also a link to the textbook “When Parents and Doctors Disagree” edited by Professor Lynn Gillam.

Another podcast I recommend is called “Ask the Specialist” created at the Menzies School of Health Research, Royal Darwin Hospital. In this, leaders from the Larrakia, Tiwi and Yolngu peoples respond to questions from doctors about effective patient and community-centred care. In one episode they explain how guardianship over a child might rest with a grandparent or senior aunt rather than the child’s direct parents. Adults too might defer decision-making about their own participation in a medical intervention to a community elder.

You’ll find a link to that show and many other resources at our website, racp.edu.au/podcast. You can also contribute to the discussion forum, or send me your thoughts via the address podcast@racp.edu.au. I’m Mic Cavazzini. I hope to hear from you.

Comments


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26 Sep 2020

Alireza Rezaei

It is a great idea to involve parents to make decision making but in some situations, the physician should give the appropriate advice for the right decision making.

02 Jul 2020

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