, 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?
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.
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,