Transcription:
Zone of Parental Discretion

Dr John Lantos: Hi, it's John Lantos. Welcome back to the Pediatric Ethics Podcast coming to you from Children's Mercy Hospital in Kansas City, Missouri, the Bioethics Center there. We are thrilled to be speaking with Professor Lynn Gillam. Professor Gillam is a professor in the Center for Health Equity in the Melbourne School of Population and Global Health at the University of Melbourne. She's also the Academic Director of the Children's Bioethics Center at the Royal Children's Hospital in Melbourne where she's been doing ethics consultations since 2005. She's an experienced clinical ethicist originally trained in philosophy and has thought about and written about most every clinical ethics issue that arises in pediatric ethics consultation, and we're going to talk about some of those today. So thanks so much for joining us, Lynn.

Dr Lynn Gillam: You're very welcome, John. It's lovely to be here.

Dr John Lantos: So tell us a little bit about the ethics consultation service at the Royal Children's in Melbourne. Who can call a consult, who provides the consults? What's the process?

Dr Lynn Gillam: So John, any staff member can call a consult, so doctor, nurse, any of the allied health professions, not families. So the service is a service set up as what we call a consultation liaison service to assist staff rather than being a direct service to families. We provide the consultations in a number of different ways depending on what best suits the needs of the referring clinician. So typically, if it's a major issue, we would do it as a group. So we convene a meeting of our clinical ethics response group, which meets with the key clinicians involved in the care of the child. We can also provide individual one-on-one consults with the referring clinician or have one of our clinical ethics team attend a multidisciplinary team meeting about a patient. So there's a range of options there.

Dr John Lantos: And what is the clinical ethics response group? Who is on that? How many people? How easy is it to pull it together?

Dr Lynn Gillam: Yes, it's a large panel. So there's approximately 50 people on the panel in groups. So we have group of doctors, group of nurses, group of allied health professionals, and a group of ethicists. So from that panel for any one meeting, we would draw a subset of those members, typically at least two from each of the four groups. So we're able to convene that we say within 24 hours, but sometimes we can do it more quickly than that. So it's actually quite agile because of the large numbers on the panel,

Dr John Lantos: And how many consults on average do you get in a month or year?

Dr Lynn Gillam: Of all of the kinds that we do, around 50 a year. Some of those are individual one-on-ones, some of those are routine ones. So we have a routine process for pre-pubertal fertility preservation, where we provide a review of every case. And probably about once a month, we would have a major clinical ethics response group meeting.

Dr John Lantos: Okay. Are there any other situations where there's a sort of routine or mandatory ethics consultation?

Dr Lynn Gillam: So the routine fertility preservation one is at the request of the clinician, so it's not mandated either by the hospital or by us. We have in the past semi-routine referral for children with differences of sex development, particularly if there's a proposed genital surgery. We've now refined that pathway so that we've narrowed down to particular instances, particular types of situations where a clinical ethics meeting would be appropriate. Otherwise, we've developed some guidelines with that team and attend their team meetings.

Dr John Lantos: One of the concepts that you've written a lot about and that we discuss frequently in our pediatric bioethics certificate course here is the concept that there's a zone of parental discretion. Could you talk a little bit about how you formulated that concept and how you use it when you do consults?

Dr Lynn Gillam: So John, it didn't come in a light bulb moment. It evolved gradually out of working, puzzling through.

Dr John Lantos: That's not the way I imagined it.

Dr Lynn Gillam: Good. I'm glad. So probably over two or three years, I guess, we started to observe in the range of case consults that we were doing, that the question of whether what the parents wanted was okay in some sense kept coming up. But typically, in these meetings, we started off with a question of what's in the child's best interests. And in quite a number of cases, that led us to go round and round in circles because we couldn't get to an agreement on what was in the child's best interests. Sometimes that was because some of the considerations simply seemed to be subjective. Sometimes it was because the medical information or the medical situation meant that the outcome was uncertain, so it really wasn't possible to hit on what was in the child's absolute best interests. And sometimes it was because what the parents valued was just different from what the doctors valued.

So there was a range of reasons that it came up. But we kept coming back to this question of getting agreement on or identifying the course of action that's clearly in the best interests of the child was difficult. But when we took a step back and said, "Okay, how bad is this? Would this be actually harmful to the child?", we found it much easier to answer that question. And as we talked about it, it became clear that the ethical principle that we were working towards was the idea that, provided the parent's decision isn't actively causing harm to the child, there's room for parents to make decisions that are different from what clinicians would decide that are to some extent suboptimal in medical terms for the child and yet still should be respected and acted upon.

Dr John Lantos: Can you think of any specific case where there was that sort of negotiation or perhaps even disagreement among members of the clinical ethics response group and this process of reasoning played out?

Dr Lynn Gillam: I guess a standard type were situations where child was in intensive care, had significant damage to the brain. This was either baby in our neonatal unit or an older child in our pediatric intensive care unit, probably didn't have conscious awareness, wasn't able to be weaned from a ventilator and clinicians, particularly the doctors involved, had reached the point where they thought this child is not going to recover, not going to get any better. It's now time to cease ventilation, allow this child to pass away peacefully. And we had parents who were strongly opposed to that.

So if we take this from a best interests point of view and ask the question, "Is it in the best interest of this child to have ventilation withdrawn and to pass away?" It is actually quite difficult when you frame it in those terms, to be sure that it is in a child's best interests to stop living. And what we found ourselves talking about was what is the child's current experience? Are they actually suffering whilst they're there in the intensive care, they're ventilated, they're sedated, they have minimal perhaps no awareness, and yet it's not going anywhere? Very hard to say that they're suffering to the parents, to such an extent that it would clearly be in their best interests, i.e., better for them to die than to continue to be alive.

Then when we flipped it round and asked, "Do the parents want to continue ventilation? Is continued ventilation actually harming the child?" It seemed much more clear cut and more possible to say this child is not suffering. We have no indication that this child is suffering. Maybe this is not the best life for them and the death that's coming is not going to be the best death, because it may well be after several more months in intensive care. But the child is not actually suffering. So those were one sort, John.

Dr John Lantos: Yeah. So it seems like it's when it's unclear what's best for the child, but there's no evidence that what's going on is harmful, those are kind of the two boundaries of the zone of parental discretion, where we defer to...

Dr Lynn Gillam: absolutely, John. And that's how we visualize it, as a zone with boundaries. And at the top end is the decision that's absolutely optimal for the child is 100% in the child's best interests. And I guess the insight we slowly developed was that there's a gap between that and a decision that's good enough and that is not causing harm to the child, even if it's not absolutely optimal. And the more we thought about it, the more we thought that is the standard in general at least in our country, that we hold parents to in terms of other sorts of decisions about their child, about what school they go to, what sports or activities they're involved in, what food they eat, we allow parents to make suboptimal decisions on all of those matters without intervening. But when they reach the point where the child is being caused harm, that's the point at which we intervene. So it seemed to match with what goes on in the community.

Dr John Lantos: That makes sense. It does lead into another topic that you've written a lot about, and that is the moral distress of the health professionals. Do you find that in cases like the one you described, the health professionals experienced some moral distress particularly from concern that the child may be suffering?

Dr Lynn Gillam: Yes, indeed. So particularly, the ventilated child that I was just speaking about. Clinicians in my experience worry about two things, that the child might be suffering even though they're sedated and even though there's no objective indicators of suffering still might be happening and that weighs very heavily on their mind in my experience.

The other thing I think that they experience moral distress about is the opportunity cost, the loss of what they see is a good death. So a good death in this circumstance is a planned withdrawal of ventilation at a time when parents are ready and comfortable with it in so far as they can be. It happens peacefully and quietly and everybody's there with the child. So that's a good death. And if ventilation is not withdrawn in that planned fashion, the child may spend more time in intensive care, have a cardiac arrest, there's an attempt at resuscitation and then the child dies and that's not a good death. So the missed opportunity for the good death I think also weighs heavily.

Dr John Lantos: And that might fall into the category that you called different values, where the parents might just have a different idea of what counts as a good death.

Dr Lynn Gillam: Indeed. And that I think is one of the incidents where it seems that thinking about the child's best interests is actually really complicated. And a number of those interests depend on value propositions on what one thinks is important or valuable. And there are just different views about it. So there are certainly parents who view the best death for their child, a good death for their child, as being one with the child fights to the end, which is not the peaceful, quiet, planned, good death that clinicians have in mind.

Dr John Lantos: Another issue that comes up in these types of cases relates to justice and resource allocation. Sometimes we hear arguments that this use of resources, months in an ICU for a child who is clearly dying is simply an inappropriate use of resources. Some of those concerns have come to the fore during the COVID pandemic, where resources have been particularly scarce. Does that come up when you're talking about these cases?

Dr Lynn Gillam: Yes, sometimes. And I think what the concept of the zone of parental discretion allows us to do is to distinguish resource considerations from considerations about the parent's decision being bad for the child. So yes, there are certainly limited resources. We have not in fact experience that limitation ourselves during COVID. Fortunately, we haven't been in that situation, but ICU resources are limited in general.

In my view, in the end fair allocation of resources trumps of both best interests of the child and respect for the parent's decisions if there really is resource scarcity. And that's one of the ethically or emotionally really difficult things about making decisions based on fair allocation of resources, that it means that a child who might benefit from those resources and whose parents want those resources still can't have those resources because it wouldn't be a fair way to allocate those in a situation of scarcity. It is very rare and in fact I cannot think of a situation where we have explicitly said advice that it would be poor use of resources for this child to continue in intensive care.

Dr John Lantos: Have you had situations where you've made a decision or recommended withdrawal of life support, even over parental requests to continue?

Dr Lynn Gillam: Casting my mind back.

Dr John Lantos: I bet you would remember.

Dr Lynn Gillam: Yes. There's a number that are coming into my mind, John. And I'm thinking that they are not withdrawal of ventilation. They are deciding not to continue with forms of active treatment, so not to continue with dialysis, not to continue to support a child whilst continuing to hope for a liver transplant, not continuing with experimental treatment for a mitochondrial disease.

Dr John Lantos: Got it. We're getting close to time here, but maybe ask you to speculate a little bit. I mean, you've been doing consults for a while now. Have you seen a change or do you see any issues coming down the pike in the near future that are unique and that we haven't thought enough about or had enough experience dealing with?

Dr Lynn Gillam: There certainly have been changes, John, in the types of cases that are referred to us. One of the changes I've seen is that they've broadened out across the hospital and across types of situations. So it used to be almost exclusively those end-of-life intensive care situations that I've described. But more recently, we're getting referrals for example a situation where parents want to amputate potentially salvageable limb because they think their child would be better off with a prosthesis than going through all of the reconstructive attempts. Another one where Jehovah's Witness parents had a child with a form of anemia that could be managed by drugs, but better managed by blood transfusion. The side effect of the drugs was to reduce the child's spinal height, so it makes them even shorter. So those are not life and death questions, but they raise exactly the same types of issues.

More recently, we have seen a lot more experimental or off-label drugs for mitochondrial conditions and metabolic conditions and for cancer. As there's more genomic sequencing of children's cancers, there's many more suggestions that are coming to clinicians and parents about drugs that could be tried that have never been used before in this situation. So we're definitely encountering the right to try idea, although we don't particularly frame it that way here.

And I suspect there's more of those coming in relation to not just the drugs, but devices like closed-loop systems for managing diabetes. Some of which are available kind of outside medical governance. So yeah, trying new things I think is a coming issue. And one of the questions it raises for me then is in terms of the personal and professional integrity of the clinician and the extent to which they could have an obligation to do something because parents want it and might even be in the zone of parental discretion, but requires an action on the part of the clinician to administer a drug to do a surgical procedure. I see us grappling more and more with those in the future.

Dr John Lantos: And to do it off-label and without a good evidence base about efficacy.

Dr Lynn Gillam: Absolutely, yes, because it might work. The child's going to die anyway, there isn't much evidence out there that it's going to be harmful. A clinician might feel for reasons, even that it's hard for them to articulate that this is a bad idea. So one way of looking at that is it is within the zone of parental discretion to do that, but it's actually asking a clinician to do something that may feel quite strongly is a bad idea.

So, it brings in another ethical consideration. Again, it's not just whether the parent's decision is harmful to the child, but it's about the right of the clinician to make their own decisions about what they will and won't do. The amputation example that I was talking about a minute ago was another example of that, where the amputation was not what the clinician thought was the best thing to do. The decision to ask looked to be parents' decision, looked to be in the zone of parental discretion, but that required the clinician to go into theater, pick up his implements and removes the child's leg when he thought it wasn't the right thing.

Dr John Lantos: And do you see genomics as playing a role in this, that we're better able to diagnose specific rare diseases and therefore target therapies? Is that how it works?

Dr Lynn Gillam: That's certainly the way it's working for us, particularly in relation to cancer at the moment. So we're doing a lot more genomic sequencing routinely of either/or relapsed or difficult to treat cancers or were I think about to embark on all cancers. And so that means that suggestions for ideas for possible drugs that haven't been used for which there's very little evidence are now coming through routinely rather than being a very unusual situation where either a very keen clinician or a very determined parent has really gone out and looked. Now, the suggestions are coming in and we have to respond to them. Well, I think one of the things that's really interesting there is the extent to which parents should get access to all of the information which clinicians might get access to in terms of possible drugs, but that's possibly a topic for another time, John.

Dr John Lantos: We will look forward to having you back to talk about that and perhaps even your work on the Victorian Independent Medical Advisory Committee on medical cannabis, but we don't have time to get into that today, but thank you so much for spending a little time with us. We've been talking with Professor Lynn Gillam, a Professor in the Center for Health Equity and the School of Population and Global Health at the University of Melbourne. Professor Gillam was also honored by being made a member of the Order of Australia for service to medical education in the field of bioethics.

This is John Lantos. We're coming to you from Children's Mercy Hospital in Kansas City. And this is the Pediatric Ethics Podcast. Thanks for listening.