Ep62: Essential Ethics in Adolescent Health

Ep62: Essential Ethics in Adolescent Health
Date:
11 August 2020
Category:

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

In episode 59 we shared a sampler of the Essential Ethics podcast from the Children's Bioethics Centre, at the Royal Children’s Hospital, Melbourne. A couple of cases studies were presented to help us define “the Zone of Parental Discretion” – a space in which decision-making about a child’s medical care is conceded to parents even if it’s not optimal clinical management.

Today’s thought experiments come from the oncology department. First, we’re asked to consider when an adolescent should be permitted to make autonomous decisions about their health, even if these would lead to worse clinical outcomes. How does a clinical team decide whether to accept this wish or to override it? 

In the second case study, the final outcome has already been determined by an incurable brain tumour. A 14 year old girl has been diagnosed with a high grade medulloblastoma. Therapy has little chance of cure but around 30% of patients have their life prolonged by 2 or 3 years but comes with disabling side effects. The parents want to bypass recommended treatment and try prayer and natural therapies instead . Does this terminal prognosis broaden the zone of parental discretion, and how can the clinical team help the family with the terrible choices they have to make?

Credits

Guests
Prof John Massie FRACP (Royal Children’s Hospital Melbourne, Murdoch Children’s Research Institute)
Associate Professor Clare Delany (Children’s Bioethics Centre, University of Melbourne)
Diane Hanna FRACP (Royal Children’s Hospital, Melbourne, Walter and Eliza Hall Institute of Medical Research)
Kanika Bhatia FRACP (Royal Children’s Hospital, Melbourne)
Molly Williams FRACP, FAChPM (Royal Children’s Hospital, Melbourne)

Production
Written and produced by Mic Cavazzini. Music courtesy of Free Music Archive includes ‘A Path Unwinding’ , ‘The Air Escaping’ and ‘Vittoro’ by Blue Dot Sessions. Image licenced from Shutterstock.

Editorial feedback for this episode was kindly provided by members of the RACP’s Podcast Editorial Group; Lisa Mounsey.

References

Podcasts
Essential Ethics [RCH]
RCH Kids Health Info
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 Online Resources
RACP Online Congress on-demand lectures and webinars
RACP Online Congress upcoming program
RACP Online Congress Log-In
RACP eLearning and College Learning Series
the Resourceful Physician (for you to share useful resources)

Other reading
Clinical Ethics Service [RCH]
When Parents and Doctors Disagree [Federation Press]


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.

In episode 59 I shared with you the Essential Ethics podcast from the Children's Bioethics Centre, Melbourne. A couple of cases studies were presented that helped us define “the Zone of Parental Discretion” – a space in which decision-making about a child’s medical care is conceded to parents even if it’s not optimal clinical management.

Today’s stories come from the oncology department. In the second of these we’ll hear how a terminal prognosis might broaden the zone of parental discretion. But first, we’re asked to consider when should an adolescent be permitted to make autonomous decisions about their health, even if these would lead to worse clinical outcomes.

I’ll leave further introductions to podcast host Professor John Massie. He’s the Clinical Lead of the Children’s Bioethics Centre and a consultant in respiratory medicine at the Royal Children’s Hospital, Melbourne.

JOHN MASSIE:   To help us think about decision-making for teenagers I’m joined by Dr Di Hanna from the Department of Oncology. Welcome Di.

DIANE HANNA: Thank you.

JOHN MASSIE:   And Professor Clare Delany from the Children’s Bioethics Centre at the Royal Children’s Hospital and the University of Melbourne. Welcome Clare.

CLARE DELANY: Hello.

JOHN MASSIE:   What I might put to you is a case. I just remind listeners that the cases are fictional, that we’ve made up. But of course that does come from sort of a general experience and the sort of situations that we have found ourselves in before. 

So, this afternoon what I’d like to talk about is Darren, a 16-year-old with acute lymphoblastic leukemia, often called ALL. He’s in Year 11 at school and is an active sportsman and has a busy social life. The diagnosis of ALL has been a big shock and he’s been struggling to come to terms with the duration and the complications of treatment. With standard treatment he’d have about an 80% chance of cure. If he did not respond to standard treatment he’d require a bone marrow transplant. The recommended initial chemotherapy regimen includes medications that will cause his hair to fall out, and a Cushingoid facial appearance. Darren is adamant that he does not want these side effects. He’s got his Year 11 formal coming up and requests an alternative regimen even if it means less chance of success. Darren’s parents seem to be in support of him to make this choice.

So, this is a difficult situation and I think the ethical question is, is it ethically acceptable for Darren to be given a less toxic but similarly less effective chemotherapy? Di what do you think about Darren’s choice?

DIANE HANNA: So, I think this is a really tricky one. So you rightly said ALL is a curable disease – the expectation is cure, and we know that the therapy for most children is very good at curing most children and young people. For me it would not be ethically acceptable to offer a less intensive treatment for a number of reasons. The first being that it would not offer cure, and what we know about therapy for ALL is that we have to risk-stratify it, which means that based on his age the biology of his disease is inherently more resistant and requires intensive treatment to cure him. If we gave him less intensive treatment we could select a clone of ALL that becomes more resistant and makes treatment down the track even harder to get him into remission.

So that would take something like transplant off the table because we need to achieve remission for transplant to be effective in ALL. So, without kind of effective intensive therapy up front this young man would not be cured and would have a relatively short kind of life expectancy. So, I suppose I’d want to be very clear with him about his choices and make sure that the family also understood that.

JOHN MASSIE:   Di could I just interrupt, just because he’s focused on I guess what most people in the community might be focused on: hair loss, altered appearance – which would be temporary. But are there other side effects as well that are worse that he has a right to be afraid of?

DIANE HANNA: Yes, there are life threatening side effects in some cases. We know that teenagers are more susceptible to side effects of treatment and tend to experience the more severe end of the spectrum. For example, some children and young people in induction can end up with grade 4 pancreatitis and in intensive care. So yes, he – you know, the treatment itself has its risk but we know that the treatment is very effective and in 95% of cases we can get children and young people through that risky period.

JOHN MASSIE:   So Clare, he’s 16, and we’ve heard from Di that he wants less treatment and will accept a less good outcome – should we let him do that? I mean he’s 16 after all.

CLARE DELANY: It’s now a case of does a 16-year-old have – is it ethical to allow a 16-year-old to choose to refuse life-saving treatment? The first option is to find that he is competent, he’s almost an adult, if he demonstrates that he understands the significance of his choice and the consequences to allow him to choose not to go ahead with the standard treatment. And that clashes with that very strong principle of essentially not harming, not doing anything that you know is going to harm this child. The next option is to override his autonomous choice.

JOHN MASSIE:   So where does Gillick come into this? So, people often talk about Gillick competence which was a court case in England around a 15-year-old girl attending a general practitioner asking for oral contraceptive pill but not wanting her parents involved, and not wanting her parents’ consent. And it ended up at quite a high level in the courts and they agreed that she was of a sufficient age and sufficient capacity to make a decision to have the oral contraceptive pill. And therefore, it was being called Gillick competence. So if Darren is your averagely bright Aussie male, in Year 11, he’s reasonably articulate, and he’s insistent – he’s really worried about those side effects and doesn’t want them, is that just Gillick competence? Is that good enough for us just to allow that?

DIANE HANNA: I think when it comes to life or death it probably isn’t enough – yeah.

JOHN MASSIE:   Clare?

CLARE DELANY: Yeah, I was looking up – looking at some notes about Gillick competence and this statement I think is important, that the original judgment set out a stringent test of maturity, and it did so by insisting that a minor not only know and understand the relevant facts of any proposed treatment but also appreciate the significance of the treatment, it’s implications and consequences. And in this case where – translating that to Darren he needs to know not only about the facts of the treatment he’s refusing but also the significance and implications and consequences of refusing. So it’s quite stringent.

And the other piece of this update on Gillick competence is that since that time courts have really retreated from Gillick and it has become harder for a young person to be considered competent if they disagree with the medical treatment being offered. And there’s been cases and situations where the parents have the final say, despite a child being found to be Gillick competent. So, it’s been watered down a bit, especially in serious cases.

So, I would suggest that this case of Darren is a case where you could find that he is Gillick-competent, he’s quite a sort of competent and able and mature young person. But whether you know, you would ethically say it’s appropriate to allow him to end his life, that he understands that he takes appearance and short-term effects ahead of life, would be really hard.

JOHN MASSIE:   I think what you’re raising there, and I’m going to come to Di about that because she’s used to working with young people, is that’s part of adolescence, is not necessarily being consistent, not necessarily making great decisions, valuing things that grown-ups wouldn’t necessarily value. And in essence I think that challenges the idea of competence on itself, or capacity. So Di how do you feel about that when you’re dealing with 16 and 17-year-old boys in particular?

DIANE HANNA: Yeah, look it’s really – it’s really tough. And often you know, that is something that we focus a lot on in our diagnosis talks, is how their appearance will change, because that is important to them. And you know, maybe in five- or ten-years’ time the fact we saved their life will be looked back and we did the right thing. But at that moment in time and probably for the first few years of intensive treatment that that’s what he’ll be thinking about.

JOHN MASSIE:   At our conference last year Mark Mercurio from University of Pennsylvania raised this really interesting idea that the person we’re responsible to when we’re thinking about decision-making for children is that person as a 25-year-old adult. Which is interesting that he chose that number because the neurobiology would suggest that that’s when boys, in particular, sort of achieve some degree of maturity. So Clare do you think that’s right? Do you think that Mark’s hit the nail on the head there? That OK, he’s 17, he’s pretty smart, but really we’re answerable to the 25-year-old Darren?

CLARE DELANY: Yes, on the basis that there are limitations to the adolescent’s capacity to think ahead to when they’re 25 or beyond, then there’s an ethnical justification for being somewhat paternalistic in deciding that the medical treatment is in their best interests and they don’t have the capacity to come to that view. So, the next step is really to think about: well then what can you do to mitigate the harms of overriding his choice?

JOHN MASSIE:   So, what would we do here at the – well how would we move this forward or what could we do?

DIANE HANNA: Yeah – so within our team we have a dedicated Nurse Coordinator who kind of helps us with our young people, not only at the diagnosis point but at kind of critical time points or at difficult times in their treatment. I think given – it sounds like Darren’s quite a well boy, so I don’t think there’s any super rush. I think we should do what we can do to get him on board and to try to understand better really what we’re dealing with. And I think our Nurse Coordinator can help a lot in those discussions. I think it’s also helpful for them to meet other teenagers that have gone through a similar journey and have discussions with their families to walk some of the paths and to see how things have gone. There’s also, at the Royal Children’s we’ve got kind of chronic illness support programs for young people. So you know, ALL is quite burdensome but we can get rid of it and cure him – there are other children and young people with illnesses that don’t go away. And so just to have a little bit of that kind of perspective and just to see what other young people are going through I think can be quite helpful.

CLARE DELANY: And I think it’s complicated though – we haven’t mentioned the parents except to say in the case they seem to be agreeing with him. I think in a sense that really complicates things because you are having to convince both sets. If the child was younger and they disagreed you might consider removing the child and forcefully treating, but there’s no option of removing Darren and he’s too old to be removed really anyway. So you have a whole family who is ostensibly wanting to choose an option which could lead to the end of Darren’s life.

JOHN MASSIE:   So, do you think we can force the issue? We’ve sort of crossed a threshold, perhaps that harm principle, that harm threshold.

DIANE HANNA: That’s the difficult thing. So I think in theory yes, we should be – have to be able to force them. But in practice we are relying on them to be responsible and to come to their treatment. And it is – when I say intensive it means probably the first month in hospital if not twice weekly visits, sometimes three times a week visits. And that can persist for several months depending on what their treatment looks like. So, you know we’re entering into a contract where there’s mutual understanding and I prescribe the treatment but he has to adhere to it and be compliant. And it’s very easy for him not to be. So whether that’s you know, not taking his oral chemotherapy at home and not turning to up to appointments, how do we physically bring him in? Do we call the police? Do we – so you know, that’s where it becomes really challenging.

CLARE DELANY: Yeah, and it raises another ethnical conundrum which is what is the scope of the duty of an oncologist to ensure adherence? How far should you go in that? It doesn’t go as far as monitoring – that’s invasive.

JOHN MASSIE:   So if we think though that it’s not alright for him to choose another therapy and then the parents are still agreeing with him in his bad adolescent decision, and while it might be difficult to enforce the full treatment, Clare’s raised the idea that you have an obligation. So, would you ask court to make a decision and enforce the treatment?

DIANE HANNA: Yes, I think if that’s what it came to, we’d have to.

JOHN MASSIE:   Clare, how would you – ?

CLARE DELANY: Normally there – we would regard parents’ decisions about cutting off life-saving treatment to be not within their zone of parental discretion to make such a decision. And I think that’s where an ethics consultation can be helpful because it can give clinicians some empowerment about what is ethnically appropriate, so they can become more definitive about this is what is required for your child.

I’m thinking of those Jehovah’s Witness cases where the court ordered that a young person receive a transfusion. But in this case you can’t order a young person to turn up. We have three adults almost from the one family all choosing a shocking pathway in most peoples’ view, which is to choose probable death over a curative treatment. But would a court overrule three adults choosing that pathway? And I’m not sure about that.

JOHN MASSIE:   I think the court would come in favour of treatment. And I think Clare one of the things that you highlighted a little earlier was that it is always harmful to override people’s decisions, and it’s harmful to the adolescent. So even if a court agreed and we treated and saved his life we might have done so against at least his initial wishes and we need to undergo strategies that mitigate that harm and be concerned about that harm. Clare are you happy with that decision – that it would not be ethically appropriate to allow him to do no treatment or less treatment?

CLARE DELANY: Yeah – I think that it’s ethically, on paper, ethically appropriate to override this young person’s choice and the family’s choice. But the question then becomes what is the process? What is the ethical way of doing it? And I think that’s where the discussion heads. I’d be more definitive if I knew a bit more about this family, as always, and learning about what would the consequences be for this family if you took the decision out of their hand forcefully or made some other – had a state intervention.***

MIC CAVAZZINI:               The second case study from the Essential Ethics podcast further demonstrates the importance of personal beliefs to a patient and their family. In this scenario, the patient’s final outcome has been determined by an incurable brain tumour. The 14 year old girl and her parents have strong views about how much medical intervention they’re prepared face. It forces the clinical team to examine their own beliefs and biases, and to help the family find peace with the terrible choices they have to make.

To discuss the case, John Massie has invited Drs Kanika Bhatia and Molly Williams, both consultant oncologists at the Royal Children’s Hospital.

JOHN MASSIE:   What should a paediatrician do when a parent refuses treatment that is recommended? This is not an uncommon scenario in our modern healthcare system with empowered parents or patients, and our concept of shared decision-making. But what if refusing treatment means that the child will die?

This is a case that we’ve made up, and this is a 14-year-old girl we’ve called Jade who has a high-grade glioma – it’s a type of brain tumour. She presented with headaches but no evidence of neurological impairment. She’s otherwise a healthy Year 8 student. Primary surgical resection with postoperative radiotherapy is the recommended treatment. But with this is still a 30% chance that we might prolong her life for two to three years, but the treatment’s not curative. Without treatment she’s likely to die within six months. However, surgery might cause significant neurological deficits that impact her quality of life. Her parents wish to try prayer and natural therapies including considering options overseas.

Kanika, do you think it’s any one person’s decision – does it lean heavily on the medical opinion just regarding the parents and regarding Jade a bit? Or is it all evenly matched? Can you just at the beginning, get a sense of that?

KANIKA BHATIA:              I think in a situation where cure is not possible, I think that the parents and the child’s wishes when it comes to the things that they value in their life I think gain greater importance. Whereas I think in a situation where cure might be possible and the risks of therapy are not high, then I think medical advice then becomes a little bit more prominent as a decision-making tool. But I think all of those decisions still have to be made within the framework of the family’s ideas, the family’s wishes and beliefs, and their I think understanding of the situation as well.

JOHN MASSIE:   Molly it sounds like the fact that the chance of cure is low opens up a whole lot more options to allow the parents’ thinking and perspective on this to hold sway. Do you agree with that?

MOLLY WILLIAMS:          Absolutely John. I don’t think any of us as oncologists would feel incredibly strongly that we must insist that she had surgical therapy, we would not insist that she had radiotherapy, because those two things can have burdens and our expectation is that she won’t be cured ultimately, regardless of that. And I think if Jade and her family have an understanding that her life is likely to be shorter but potentially more rich in that she can participate in it fully without the therapies that we offer then I think that all of us would be respectful of their wish to not go ahead with surgery and to choose quality of life over quantity of life.

JOHN MASSIE:   So if it’s OK not to have active treatment, if we accept that, but their reasons for not wanting to do it are because they’re taking an option that you don’t necessarily agree with or believe in – like prayer and like natural therapies – is that important?

MOLLY WILLIAMS:          So I actually don’t have any strong problem with people making decisions for a whole range of different reasons, but I would like to feel confident that the person and the parent has heard and understood the information that I’m giving them and still feel that their path is a good path, and the right path, and not to expect something really unrealistic from that path.

So what I’ve often found sometimes comes up is that if the parents say, “We’re going to go away and pray and that’s going to…,” or “We’re going to go away and have cannabinoids and that’s going to totally cure her – we’ve seen that on the internet”, those families I feel often have an overblown belief in the power of their natural therapies or their spiritual therapies. And in that situation I would certainly be spending a pretty decent amount of time trying to explore the family’s thoughts and understandings about what medical therapy involves, and what their natural therapies might involve, to try and get them a bit closer to maybe a realistic understanding of what those two situations are.

So, I’ve looked after families who have felt that natural therapies were important and have said to me, “I can’t go to the place where my child might die with this cancer. I can’t talk about my child dying with this cancer. I need to keep on hoping – that’s something that’s really important for me.” And I actually really respect that as well and I try and enter into a partnership with the parents in that space where I agree that I’m hoping and wishing for those outcomes as well, and as long as they know that I’m worried and they have heard at least once that things may not go as they wish, then in the space where no realistic curative treatment is available I’m very happy for them to pursue other therapies.

I don’t think people need to think every single day, “Oh my goodness, my child is going to die from their tumour.” I don’t need to tell them that every single day and I don’t need to tell them that every time I meet with them. But I need them to have heard that that’s my big worry and that’s why I’m recommending the things that I’m recommending. I’m just hoping that they don’t have regrets in the future – that they don’t wish that they had made a different decision, that they don’t feel like they didn’t get enough information to be able to make a good decision in the first place. I think that’s what my biggest concern is.

JOHN MASSIE:   I still want to make it a little bit harder for you because the parents, they want to go and have natural therapies and maybe pray – they perhaps though even want to go overseas. So then I’m concerned that they’re going to lose the opportunity for good palliative care and good end of life. So even if they’re not pursuing complex, difficult therapy that’s full of side effects they’re still potentially missing out on something. Now Kanika am I just being a control freak and wanting to give them everything, or should I be concerned, or would you be concerned about them going overseas for these unproven therapies, and missing on something they could have here if they stayed?

KANIKA BHATIA:              Yes absolutely. So that, I mean, is always an ongoing concern for me. Some of the therapies that families pursue overseas are not without risk, and that is another concern that I have. Often these therapies are unresearched. They are sometimes in institutions that have no supportive care measures. So, in many cases I try and sort of highlight these issues with families if that is what they’re proposing. But often in these situations because these are emotional decisions they’re very hard to challenge and they’re very hard to give or provide a logical framework too. So the only thing you can do or I’ve found that I’ve been able to do in this space, is just to make sure that the family’s linked into all of these supports in our hospital, so that when they return that they can access those supports and that child has all the supports they need.

And often that can be very small things like making sure they have a music therapist or an art therapist that goes to the home, because they are small ways that you can engage a family and a child that allow you a window into what’s going on. Because the last thing you want to do is lose contact entirely, because then you have no hope of helping that child.

MOLLY WILLIAMS:          I think that Kanika is absolutely right – the one thing that you’ve got to do is keep the door open, you’ve got to keep reaching out to these families and making these therapies and these supports available. But you can’t force people to access care. In terms of the families going overseas I remember strongly the words of a dad with a child with the same incurable brain tumour that we keep on talking about, who said – who went to pursue natural therapies overseas – and he said, “You’ve told me that there are tigers all around – what should I do? Should I just wait until the tiger takes my child or do I scoop them up with this hope that maybe I’ll be able to get away from the tigers for a while?” And that really resonated with me – I really understood where he was coming from.

JOHN MASSIE:   So you’ve raised quite a number of issues in that Molly that we’re going to need to pull apart, and one of them is in a little bit around sort of risk perception and even that is balanced against choice architecture which is the way we present that information to them. Because I think there’s their perception of what the risks are but there’s also the person explaining it to them who will for a whole variety of reasons, hopefully as the doctor be informed by their medical, but will have personal views too. So Kanika how do you balance that if we’re thinking about the choice architecture and the way you’re “selling” the information, if I might use that word, and gauging the parents’ risk aversion?

KANIKA BHATIA:              In terms of trying to relay openly and honestly what the choices are and what the prognosis is for a family can be really difficult because some families don’t wish to have that knowledge. And so, I try to be as honest as possible in relaying that prognosis but I’m also aware that sometimes that information can be very overwhelming. Often when you have a family that’s facing a huge life-changing moment, sometimes it can for some families take a long time for them to actually process the information that you’re providing.

So I think in the first instance when you relay the information, I think it’s something that you have to revisit on several occasions to try and check in and see what part of the information that you’ve given is understood by the family and what their understanding is. And I think it’s important to also engage a number of your team in that process. So, you know the nurses that we work with and social workers, who can also help gauge a parent’s understanding in their decision-making, then you can get a better idea of whether it’s realistic. People do of course rely upon their cultural and their spiritual and their personal experience to help them cope in such a space, and so I think you have to be aware of all of those factors and try to understand what role they’re playing in the decision-making.

In terms of how do you recognise what part your own personal perspective or emotions play in the information that you provide, we as a team I think heavily involve other colleagues in our decision-making so that we actually do have another clinician’s, or several clinicians’ perspectives so that when we’re telling a family what we think is the right pathway we have a number of perspectives that are emotionally a bit more distant from the family informing that decision. And I think that that’s really important because it provides a lot of confidence that we are hopefully providing the most honest appraisal of the situation.

And I think that’s important for a family to realise that they’re not alone in that decision-making space because it can be incredibly lonely to be making such huge decisions about your child’s care and welfare in an area that you have no experience in, that you never expected to be in. And I think families need to feel that they have professionals who have been in this space before and guided other families before to help them make the best decision possible.

JOHN MASSIE:   Well I might ask, Kanika, have you had experience where something like this has happened? And if so, do parents then who have obviously been respected and allowed to go off and make their choices, but actually later on regret those?

KANIKA BHATIA:              Most recently I was at a conference and I bumped into the parent of one of the children I took care of who had an incurable brain tumour. And it’s an incurable brain tumour that is in a location that is not amenable to surgical resection. And they sought further therapies privately through a surgeon who was willing to offer them that surgical resection. And that didn’t benefit their child’s life, it didn’t prolong her life. And in discussion with this mum after that process had been done, although she didn’t regret that decision she acknowledged that it didn’t change anything for her child. And I think though that even though she could reflect that that decision was not of benefit for her child, I don’t think she had regret about taking that decision because I think it was an emotional choice, it helped her deal with what was happening with her child at that time.

JOHN MASSIE:   So we’re talking about what the parents need and that’s important, and of course it truly is an incurable cancer then the parents are left behind to grieve, often for a very, very long time, so how they remember the illness and the end is important. But of course, our patient is the child and in this case Jade is 14. Molly do you think Jade’s in a position to determine which pathway?

MOLLY WILLIAMS:          I think it depends on who she is, the kind of person she is, and the – I guess the maturity of her thinking process. From a palliative care point of view, I’ve certainly looked after adolescents who prefer to have more pain and less sedation and that’s a decision that I’m happy for them to make. I guess one thing that I would say is that although we see in the Charter of Human Rights that every child should have knowledge about their illness and their prognosis and their diagnosis, and I think it’s incredibly important for us to give children the opportunity to take some part and have their voice heard in this really difficult decision-making – but we shouldn’t force them to. And in fact with my adolescent patients often I will talk to them about what they would like to know and how much they would like information to be filtered through their parents’ voice and how much time they want to spend alone with me.

And I’ve certainly got some patients who say, “I actually don’t want to hear things from you up front. I’d rather mum and dad filtered that for me beforehand because I find it too anxiety provoking, and I feel really confident with them making my decisions for me.” There are other young people who feel very strongly that their voice matters and that it is their body and that they should have the ultimate right to have the final say in decision-making about what happens to them, and that’s also a voice that I would like to hear. And in the space of a palliative diagnosis, an incurable diagnosis, would present – would have a very, very substantial weight on that child’s voice. In the case of a child who was much, much, much more likely to be cured, if the child said. well no, they wouldn’t have that therapy – I’d be more worried about accepting that at face value.

Because there are some children I think who genuinely can imagine themselves in the future and make decisions based on the knowledge of themselves in the future, and there are some who can’t do that as adequately. I think we need to rely on our psychological colleagues and our adolescent medicine colleagues to help us to get a better understanding of the child and their capacity to make decisions based on an understanding of where that might lead them in the future.

JOHN MASSIE:   Molly you have been involved in situations where the parents are shielding the child from any information. Kanika how do you handle that situation where here it’s between you and the parents and they don’t want Jade to know and they’re not letting you do what you want to do and talk with her?

KANIKA BHATIA:              Often parents of course want to protect their child but hold also an idea of their child as still a child. And so I think sometimes it’s about educating parents about the fact that a child who’s say Jade’s age, who’s 14, who’s able to read, is able to go on the internet, is able to investigate – understands a large part of conversations that might be going on around her, actually is probably a lot more aware of her diagnosis than her parents would recognise. But she doesn’t want to her hurt her parents by talking about it and actually that puts her in a more worried, more scared position, because she’s unable to talk about her feelings freely and honestly. And for some families that’s enough to bring them around to the idea of having limited discussions with her directly. For some families it’s not, and I think that you just continue to have to work and encourage them to try and engage their child.

Often I also like to explain to parents that say in children that are maybe a bit younger than Jade, that the language that we use such as cancer or the name of a specific tumour, which adults – it carries a lot of fear that personal experience or society has given us. But children don’t always carry that same amount of fear or distress when hearing those words, and it’s OK to use those words. Because it’s OK to name what’s happening with the child, so they have a better understanding of why their body is changing, why their family is so upset. And then actually can be really supportive for the child and protective the child to open a door and allow them to talk about what’s happening. Of course you will always have parents that never reach that space and that’s always a very, very difficult space to be in.***

MIC CAVAZZINI:               That was Kanika Bhatia and Molly Williams and in the previous case study you heard guests Clare Delany and Diane Hanna.

Many thanks to John Massie allowing me package these episodes of the Essential Ethics podcast for you. Also to show’s co-creator Professor Lynn Gillam, who is Academic Director of the Children’s Bioethics Centre.

There are other episodes available which explore decision-making with children a bit further, and other quandries throw up by the delivering care during the COVID-19 pandemic. You can listen to Essential Ethics through any podcasting app or directly from the website of the Royal Children’s Hospital, Melbourne. Go to rch.org.au/bioethics and you’ll also find useful references on ethics and the law. Another podcast produced by paediatricians at the Royal Children’s Hospital is called RCH Kids Health Info. The hosts break down common concerns of parents in an easily accessible way.

This episode of Pomegranate Health forms part of the RACP Congress Digital Program. If you log in you’ll find recorded lectures and webinars on topics such as paediatric mental health, healthy cities, and equitable delivery of disability services. At racpcongress.com.au there’s also a schedule of future webinars running all the way to October which you can attend virtually live.

To all listeners staring this endless pandemic in the face, we are immensely grateful for your service. Please look after your wellbeing as well as that of your patients. The College’s counselling service Converge International has some specific supports just for you.

All the best. I’m Mic Cavazzini

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23 Sep 2020
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