Department of Health

Medical Treatment Act Paediatrics Dr J Hynson

  • 04 March 2018
  • Duration: 22:03
  • Dr J Chesterman

    We move onto our next presentation, which is from Dr Jenny Hynson and Professor Lynn Gillam. Jenny is an Associate Professor and Consultant Paediatrician with the Victorian Paediatric Palliative Care Program at the Royal Children’s Hospital in Melbourne and Lynn is the Academic Director and Clinical Ethicist at the Royal Children’s Hospital of Children’s Bioethics Centre in Melbourne and an important point to note about the new legislation is, of course, that children can create instructional directives, where they have the capacity to do so. So, with that note, I’ll hand over to our guest speakers. Please make them welcome.

    [Applause]

    Dr J Chesterman

    Sam, if you could just call up the …. just push the right one. That’s it.

    Dr J Hynson

    Technology is not my thing, I’m afraid [laughter]. Alright, so I’m going to speak for the first half and then Lynn will join us and talk about some of the challenges that this presents. So, my role is to give you a bit of an overview about what the Act provides for people under the age of 18, which we’ll refer to as young people, whether they be in a paediatric setting or an adult setting. The circumstances in which this new capacity can be useful and, as I said, Lynn will share with us some of the challenges that we’ve thought of. 

    So, I just wanted to do some reflecting on the paediatric context. Just to provoke some thought about the differences and none of what I’m going to say to you is exclusive to paediatrics but it’s some of the things that we come across when we’re dealing with parents and young people. This is a photo of a very well-to-do Mum, middle class Mum from Notting Hill in London, whose little boy had a brain tumour and she basically wanted to try some alternative therapies with him, but he had a brain tumour that had a reasonable chance of cure. So, there was some fighting and discussion, and, in the end, she ran away with him and hid but the courts ruled that he should be brought back and have treatment. So, I’m really just highlighting and it’s a harsh reality in paediatric practice that the needs of parents and needs of children are not always aligned or the same and it does make it difficult sometimes for parents to make good decisions for their children. At the core of what we deal with, I think, is social models of what a good parent is when a child is very sick and what I see in my work, is parents wrestling with this question. Do you mortgage the house and go and seek that alternative therapy in Mexico or do you prioritise your child’s comfort? What is the right thing to do? What does the community expect of you? What do you expect of yourself and there’s not really social models around that and every parent has to work that out for themselves and you can only imagine the conflict that must go on in their mind. We now can rescue a lot of children from death and we can delay death by setting up little mini ICU’s at home and encouraging parents to become life support systems for their children or to extend that role and that becomes very difficult later on when perhaps that role needs to change or there needs to be different priorities for the child. This little baby will grow up, at some stage, and parents will have to make a decision. It’s very hard to turn yourself off, if you’re the life support for your child. 

    We deal a lot with notions of hope, as I’m sure many of you do in your work but also, miracles. Certainly, the institution I come from is very keen to talk about miraculous therapies and I don’t begrudge that at all but sometimes there can be an unbalanced message about what’s possible. So, miracles play on families’ minds a lot and then finally, to bring a sort of more into the world of advanced care directives, we’re dealing with children who are growing up and developing autonomy and, often, these children have a lot of experience with illness and losing friends to the same illness and observing what goes on in a big hospital ward. So, they’re very knowledgeable about what’s going on and have a lot of experience of being unwell. So, they really do need to have a role in the decision-making and, of course, any of you who are parents of adolescents will know about sometimes they just want to make a decision because you don’t like it. So, we have to think of that as well. Realistically, in the paediatric context, even with adolescents, most of the decision-making through an advanced care planning process, where parents and children and doctors and nurses and allied health teams sort of work it out together and they may or may not document decisions if they’re reached and those documents, importantly, are part of the medical record and they’re a communication tool but they’re not enshrined in any sort of legislation and they’re not enshrined in this new legislation either but there is an important piece that is now enshrined and I’ll talk about that in a second. 

    The other concept that is really important is that parental decisions about medical treatments are not binding and can be challenged and overwritten. So, the new Act provides for a young person, regardless of age, who has capacity to actually make a directive, just like the ones that John has been discussing. So, a values directive or an instructional directive that is legally binding and would be binding ahead of anything that a parent wanted. So, this is a really huge change. A very big deal for us and we have to be really careful about how we operationalise this. There is no lower age limit but, just to give you a sense, realistically, we would not be expecting a young person under the age of 14 to have capacity. 

    So, the other thing that can be provided for is that a young person can appoint a support person, just like John described, who may be another young person, which is interesting, but they may not appoint an alternative medical decision-maker. That role defaults to the parents if the young person loses capacity. So, the most crucial aspect of the legislation from our point of view hinges on the assessment of capacity and it’s a very, as I say, I want to emphasise what a huge thing this is - what a huge responsibility this is and, if we assess that a young person has capacity, they can make very significant and binding decisions. So, we have to be very careful and we’ve thought very hard about who should be able to do this, and I’ve just really sketched out the kinds of professionals that can do it. There are obviously a lot more details in the regulations but, essentially, a child and adolescent psychiatrist or a neuropsychologist, working in a paediatric setting. 

    So, the things to think about are that the young person needs to have capacity to think ahead, to project forward and to make a decision that will be binding in the future which, again, is a really big thing and sometimes adolescents have unstable decision-making processes. What I’m saying is they can change their mind and they need to understand the significance of each individual decision. 

    So, I’m going to hand over to Lynn now. She’s going to talk about under what circumstances this might be useful and some of the challenges.

    Professor Lynn Gillam

    Sorry, I’m just getting instructions on the zapper and I’m not very good at left and right. So, one of the things we’ve been thinking about is when might this provision for a young person to make an advanced directive actually be helpful in their care. So, we’re thinking … and we tried to think about that, in terms of particular scenarios and features of a scenario. So, it seems likely to be of use where, as Jenny was pointing out before this, there’s a situation where we might expect some sort of misalignment between what the young person would want and what the parents might want and, I guess, Jenny’s aware of some situations in which you can see that that is coming or that might exist at the moment and, also, whether the young person currently has a life-limiting or a life-threatening condition. So, we’re probably not talking about young people who are currently well because there would be no particular reason for them to anticipate needing an advanced directive. It would also have to be a situation in which there’s reason to think that that young person would potentially have capacity to make the advanced directive and this is going to be one of the tricky things. There’s no point in offering an advanced directive to a young person if it looks like they’re not going to have capacity to make it when they’re formally assessed and it would also need to be a situation in which it is reasonable to envisage that the young person might lose capacity probably in the relatively short-term future before they become, essentially before they become an adult and have the opportunity to make an advanced care plan in an adult type setting. So, guess we’re mainly envisaging a paediatric setting but we’re also very aware that many adult facilities have patients who are under the age of 18 who may have come through a paediatric setting or who may not have. So, there’s a number of different ways, I guess, that we can get to this position. So, with those general features in mind, here’s a possible scenario. So, we’re thinking about a 16-year-old who has a cancer, who has had treatment for that – a brain tumour and had surgery, chemotherapy, radiotherapy. The tumour is progressing and, as is often the case these days, the next thing to try is an experimental treatment which has not very good evidence of benefit, so it’s very much a last resort but the young person’s parents are very very keen to try everything to keep their child alive as long as possible. The young person, on the other hand, is already saying explicitly, for example, to nursing staff who are looking after her that she has really just had enough, and this is someone who has been through a lot and has seen other young people die around her. So, very aware of what the circumstances are and what it means to say I’ve had enough and, also, is in the situation where she may lose capacity at any time. So, a brain tumour puts her at risk of having a bleed into the brain at any point and, if that happened, she may be rendered completely unable to communicate or, at least, that may affect her cognitive functioning so that she could actually lose capacity. 

    So, that might be a situation in which it would be helpful and beneficial for Rosie, that young person, to have the opportunity to make an advanced care directive if she wanted to and that could be a values directive, just saying this is what’s important to me, these are the things I value, these are the things I don’t want or she might even want to make an instructional directive where she says, ‘I do not want any further chemotherapy’. 

    Does that make sense? Yeah? But that’s probably going to be a fairly rare circumstance. We’re not really sure and this is one of things that we’re trying to think through at the moment. The other thing we’ve been thinking about is whether there might be a place for this provision for advanced care directives in our hospital standard transition program. So, we have young people with chronic long-term illnesses, you start off in the paediatric setting and then go through a formal transition process into adult care. So, some example might be young people with cystic fibrosis with muscular dystrophy, diabetes, a number of other conditions that are going to essentially to be life-long. So, we could think about whether talking about advanced care directives, as part of talking about learning to manage your own care and preparing for life in an adult hospital. Perhaps, advanced care directives could be part of that discussion, which wouldn’t necessarily mean that the young person would make them at the age of 16 but to start thinking about that and being aware that it’s one of the options that are open to them. 

    So, there’s two sorts of circumstances in which we can see that this option for under 18s to make an advanced care directive could be relevant and useful and helpful but there are clearly going to be some challenges and Jen’s alluded to some of those already. One of things that’s different here is from the adult setting is the question of who to offer this process to. So, if we’re thinking about adults and I think John said before, we assume every adult is competent or has capacity, unless demonstrated otherwise but we don’t assume that of teenagers. So, the question of who to offer it to becomes a much more difficult question and we’ve got the parents there, in a way that we don’t have someone in the position of the parent, for an adult, feeling that essentially, they should be in control of the decision-making process. So, by the time Rosie got to be 16 with her brain cancer, her parents have been making decisions for her all along. To now broach to her the possibility that she could make an advanced directive, which would set in place a decision that her parents don’t agree with, is quite a big step to take. Is it okay to do that directly to Rosie? Can Jen talk to Rosie? Or, does Jen need to talk to Rosie’s parents first and say is it okay to discuss this with your daughter, knowing that they might say no but she has a legal right to … she presumably has a right to have access to that thing that is legally available to her and, related to that then, as Jen has already alluded to, is this very complex question of how to assess capacity of a young person who doesn’t have a life history of stable values but is still growing into their own lives. So, there’s a question of on what basis are they going to make a plan for the future, when they don’t necessarily have a really good sense of what their future would be.

    We can envisage situations in which parents would strongly disagree with an advanced directive that a young person has made and might want doctors to disregard it. We already know that the legislation has provisions for disregarding an advanced directive. It’s possible that there would be lots of pressure and we need to really think through how we would manage those situations and then there’s questions about how much effort to put into looking for the advanced directive of a young person if there’s not an expectation that every young person is likely to have one, in the same way that there might be for an adult and how the support person would work in practice and how they would relate to the parents, particularly if the support person appointed by the young person is another young person or even potentially a child. There doesn’t seem to be any requirement to assess the capacity of the support person. So, that could be the 10-year-old sibling. So, how is that going to work? So, those are a lot of implementation challenges about how it’s actually going to work in practice but, I guess, our main message today is that this is a really big change and something that we can see benefit for, but we also need to think through very carefully. So, thank you very much for your attention and, I guess, we’ve got time for a couple of questions, do we? 

    Speaker 1

    Yep.

    Professor Lynn Gillam

    Great, thanks.

    Dr J Chesterman

    We’ve got a roving mic, I think. Any questions for Jenny or Lynn? There’s one right down the front here. Thanks, Sarah.

    Speaker 2

    Hi, I’m from the Mt Beauty Hospital. Would there be a legal obligation for you to offer this to the child? 

    Professor Lynn Gillam

    That is a really excellent question. Shall we ask John? I don’t think that the legislation says that there is a legal obligation for us to offer, does it? The opportunity to make an advanced directive.

    Dr J Chesterman

    That’s a kind of a … I mean, you can ask the same thing about the general population. Is there an obligation to offer? There’s no duty to offer this but you have to think about it as kind of a professional obligation in providing care for someone, whether this is something that falls within in that. It’s not in the legislation.

    Professor Lynn Gillam

    So, that’s exactly what we’re wondering. Is it our professional obligation in all circumstances or only some circumstances and who decides on the circumstances?

    Dr J Hynson

    I’m leaping up to the stage because sometimes these things can take on a life of their own and everyone feels like they need to rush in and start offering advanced care directives to young people. I think you have to be very very careful and I think, you know, parents don’t always get it right, but they do know a lot more about their child than we do. I think we have to be very careful about leaping into a family culture and doing something because we think that we have an obligation to do it. You might really mess things up quite a lot. [Laughter] I think it requires exquisite judgement and not a blanket kind of …

    Dr J Chesterman

    We just have two more questions. Bear in mind, you can also be texting your question and come to it later on during a whole panel session. So, just these two questions and then we’ll move on.

    Speaker 3

    I’m from Western Health. Isn’t this, though, a question of Gillick competence? I mean, you would assess as a Gillick competence issue and, if there is evidence of an advanced care directive, that to some extent might be during considering whether or not they may be judged as having competence under the Gillick competence test.

    Professor Lynn Gillam

    So, I’m very conscious that there are lawyers in the room, so let me try and answer.
    [Laughter]

    So, competence … Gillick competence is your idea of capacity to make a decision by a young person and that is in the context of agreeing to recommended medical treatments. So, having the capacity to agree to recommended medical treatment is potentially different from and less than capacity to make a decision to refuse treatment in the future. So, I think the bar is going to be higher if we accept the idea that judgement of capacity relates to the type of decision that you’re making.

    Speaker 3

    I don’t disagree with what you’re saying. If they have an advanced care directive in place, it’s the fact that it can be taken into account in a similar way that you might assess competence under the Gillick competence test. They may actually have the competence to make those decisions in their own right. That’s what I’m saying. I mean …

    Professor Lynn Gillam

    The fact that they have an advanced directive is evidence that they’re competent.

    Speaker 3

    Not only, it’s one of the factors you might take into account if they’ve shown some ability to take into account their own care needs and make a judgement about that. I’m just asking that question [unclear]

    Professor Lynn Gillam

    Can I think about it a bit more and get back to you because they would have to be formally assessed as having capacity, in order to make the advanced directive?

    Dr J Chesterman

    And, indeed, Lynn is on the panel later on. So, there’s an opportunity for you to have another say later on and people can ask questions about this. Just quickly, that last question. Just if it’s a quick question, we might take it on notice otherwise,

    Speaker 4

    It is a quick one. I’m from South West Health Care in Warrnambool and I’m just thinking that, from a regional or rural perspective, we’ve got a lot of young people with life-limiting illness, who don’t even make it down to the Royal Children’s or it was years ago that they went to the Royal Children’s and their main care is now a general paediatrician in Warrnambool and, if that young person, that 16 year old, wants to make an advanced care directive, will they have to come all the way down to Melbourne to see a Neuropsychologist or a Paediatric Psychiatrist of the likes that we don’t have in regional Victoria to make this advanced care directive?

    Professor Lynn Gillam

    Great question. We’re really mindful of it and, clearly, if it’s going to work, they have to be accessible in a way and my short answer is telling that … yes, Jen’s nodding at me. So, there’s got to be some way to make that possible.

This presentation discusses what the Medical Treatment Planning and Decisions Act 2016 provides for people under 18 in paediatric or adult settings, including when advance care planning for young people can be helpful and the challenges for implementation.

Presented by Associate Professor Jenny Hynson, Victorian Paediatric Palliative Care Program at the Royal Children's Hospital; and Professor Lynn Gillam, Children's Bioethics Centre at the Royal Children's Hospital.

Reviewed 04 March 2018

Health.vic

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