
Ethical conundrum: When parents make decisions about medical care for their kids
Transcript
[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Parents are usually the ones making health care decisions for their children, but what if a parent makes a decision that will end up harming the child? A pair of researchers explore parental reasoning and health care decision making in a paper that was published recently in the American Journal of Bioethics. Today I'm speaking with the authors. Dr. Amy Brown is an associate professor of both pediatrics and of bioethics and humanities at Upstate. And Dr. Bry Moore is an assistant professor in the department of health, humanities, and bioethics at the University of Rochester. Welcome, both of you, to "The Informed Patient."
[00:00:51] Amy Brown, MD: Thank you for having us.
[00:00:52] Bry Moore, PhD: Yeah, thank you so much. It's great to be here.
[00:00:55] Host Amber Smith: So why is it important to understand the reasoning of a parent or a caregiver who's making decisions for a child?
[00:01:02] Bry Moore, PhD: I think it depends on who you ask, right? I think if you ask a clinician why, a pediatrician, someone who's working with patients and families, why it's important to understand parents or caregivers reasons, they're gonna give a slightly different answer to why parents might think it's important or why a clinical ethicist -- Amy and I both work as clinical ethics consultants for our hospital systems -- why we might think it's important to try and understand where parents are coming from.
[00:01:31] Host Amber Smith: Well, what can doctors do if the parent wants something that is not in the child's best interest? Dr. Brown?
[00:01:40] Amy Brown, MD: Yeah, so there's a lot of different pathways and it depends in part on what the decision is and what might happen if we don't do the thing that we as doctors are recommending. Because if you think about all the medical choices that are out there, there are some things that are very strongly recommended, like, "we need to do this, or your child could get seriously ill or even die," versus "we think this is a good idea, but we know that it doesn't always work," or "we know that some children where we don't give this medicine, we just observe, we know that some of them will do fine, and some of them will come back and need treatment, and so we recommend treatment, but it might also be considered reasonable to pursue one of those other options."
Sometimes the decisions are about things parents want to do that are outside the scope of Western medicine. So I can say things like, "well, I can't recommend you do that. You use that herb or you use that treatment. I can't recommend you do that or don't do that because it's not part of what I do as a Western trained pediatrician." But I can respect your decision to, say, go see a provider who is trained in that tradition and talk to them about the risks and benefits.
[00:02:53] Bry Moore, PhD: Just to add to that, Amber, I think one of the reasons why it's important to understand parents' reasoning when it comes to these sorts of decisions is so that, hopefully we can avoid things like going, you know, if a parent doesn't want a recommended medical treatment, we can avoid trying to override, engaging child protective services, kind of going all the way to that level. If we can understand where they're coming from, as Amy's talking about, hopefully we can try and work with them. We can find compromises. We can kind of make sure we understand the same information, if that's possible.
One of the reasons to understand where parents are coming from to try and sort of elicit and engage with their reasons is to engage in that process that Amy's describing.
[00:03:37] Amy Brown, MD: And the goal is to reach a shared decision that even if we can't say it's absolutely best we can say is really good enough, is going to keep this child safe and protect them from harm. And we would like to do that in as shared a way as possible with the parents where we're really all part of the same team trying to achieve the same goals.
But underlying that is the idea that if the decision that the parents, that the family, wants to make -- because it's not always the parents, sometimes it's grandparents or a guardian -- if the decision they want to make is really going to cause irreversible harm, that we need to step in and talk to the child protection system and prevent that harm from reaching the child.
[00:04:20] Host Amber Smith: Do pediatricians risk losing the patient if the parent disagrees with the care that the doctor wants to provide?
[00:04:28] Amy Brown, MD: Sometimes. Again, I think it depends a little bit on the decision. And as many people listening probably know, there are many pediatric practices locally and in other places that don't accept families who don't agree to vaccinate their children. They're starting from a place of saying, "you know, if you don't agree with us on this really fundamental approach to pediatric care, we don't think we're going to be able to work together. You probably need to find someone, the family probably needs to find someone whose mindset is more like theirs." Because yeah, sometimes it's a disagreement over one thing, and the relationship can continue. And sometimes it reflects a really fundamental disagreement about, say, all of medicine and how medicine should be used and what it means to have a good life or a healthy life.
[00:05:15] Bry Moore, PhD: Just to add to that, I think not just whether a pediatrician disagrees with parents, but how they go about communicating that disagreement and engaging the family, that is also really, really important to consider. We can disagree in a way that's still respectful and works at maintaining a relationship, right?
Or we can disagree in a way that is really destructive and won't allow for that relationship to continue. And it's going to be driven a lot by sort of parents' preferences around how comfortable they are with disagreement or engaging in that back and forth and sharing different perspectives with that pediatrician.
[00:05:47] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Upstate pediatrician and bioethicist, Dr. Amy Brown and University of Rochester bioethicist, Dr. Bry Moore.
In your paper, you write about a case inspired by a real ethics consult involving an 11-year-old girl. Can one of you explain the case?
[00:06:11] Amy Brown, MD: Yeah, so this is a hypothetical case. In the paper we start with this very simple scenario, and then we do a lot of different what ifs. What if the family said this? What if the doctor said that? But the child is an 11-year-old who was born prematurely and so had some problems with her intestines where she ended up with not enough intestinal tissue left to really help her absorb food and nutrition and grow. And so she is a candidate for a small bowel or intestinal transplant, and her doctor is interested in sending her to another center away from home, another hospital to explore those options and perhaps get that transplant.
[00:06:55] Host Amber Smith: Is the transplant typically done to treat her condition?
[00:06:59] Amy Brown, MD: For children with the most severe forms who don't really have any other options to be able to be fed and to grow it is an option, but it's not a sure thing. It's not a simple procedure. It has a lot of risks and side effects and requires a lot of time in the hospital. And it doesn't always work. It's not always successful for everyone.
[00:07:20] Host Amber Smith: OK. Well, can you walk us through the variations that you included in your paper and talk about the reasons the parents might refuse a transplant in each of these variations, Dr. Moore?
[00:07:35] Bry Moore, PhD: We cover a handful of sort of different reasons that parents may offer for refusing the transfer for evaluation for the potential intestinal transplant. And these are based on the kinds of things that we often hear from parents in ethics consults in practice,every week.
And the variations include an absolute lack of resources, so just the incredible amount of financial strain that the transfer, that moving interstate, pursuing this evaluation in a place that's not their own home could potentially place on a family like this.
We talk about sort of a relative lack of resources, so it's not necessarily that the if the family absolutely cannot afford it, but just that it would still create a lot of strain compared to, say, another family.
Social burdens of treatment, so just sort of thinking about all of the other sorts of burdens, social burdens, tensions on relationships, taking perhaps other children out of school, things like having to change jobs or maybe losing your job because you're moving interstate. So just sort of thinking about that broader social context of a move like this for a family.
We might hear families, parents say, " I don't know how to do this. Like, how is this going to impact my own circumstances, but also the rest of my family?"
Quality of life, so if we move, for example, the patient, the child in the case that we describe interstate, we're probably going to be living in the hospital, right? Like our whole life is going to be about this evaluation, and we're not going to, perhaps, know anyone there or have any social support. So what's our quality of life, both for the patient but also the child and family together, going to be like if we do make this move?
Mistrust in the health care system. This is one that comes up not infrequently where we might hear from a family that perhaps they're refusing the transfer for evaluation because they don't trust the information that we're giving them or the recommendation that we're giving them. Or they've had really negative experiences in the health care system.
And last but not least, sometimes we hear faith-based reasons from families, right? So we might hear that perhaps they're trusting that God will cure their child, or they're hoping and praying for a miracle. And that this is why they don't feel at this time that they want to go ahead with a transfer and evaluation or the recommended medical plan.
[00:10:03] Host Amber Smith: So, in all of those circumstances, what is the ethical conclusion? Dr. Brown?
[00:10:10] Amy Brown, MD: This is something we begin to lay out in this paper. And we are in the process of doing some empirical studies where we talk to both physicians, doctors, clinical ethics consultants, and hopefully eventually other people in health care about how they incorporate these reasons into what they think should be done.
And when we say what they think should be done, the decision on the table is often, do we accept the parent's decision as it is? Do we continue trying to discuss and compromise, and what does an acceptable compromise look like? Or do we say, no, this is unacceptable, this is harmful in a way that really becomes neglectful or abusive, and we need to talk to the child protective system.
Those are the pathways that are open to the health care team when they're thinking about these decisions. Does that make sense and help clarify?
[00:11:06] Host Amber Smith: Yeah. So it does sound like it might be different depending on their reasoning, but that there's not one answer that's right for this particular 11-year-old girl.
[00:11:18] Amy Brown, MD: The reasons can tell us things like if we were to go down the pathway of thinking this is just too harmful, this child is going to die without this treatment, the reasons help us think about, well, what are the harms of trying to intervene, bringing the child protective system into this family's life?
If, for instance, we know there's a lot of potential harms in one of the scenarios to the other siblings and to the parents that this is going to be really disruptive to their family life and maybe sort of result in their other children not having great outcomes or not being able to access the resources they need, then we might say, well, OK, is it really right to try to force the family to do something that would help one child but hurt the others?
That's the way in which we can think, and the reasons can also help us to think about what the compromises might look like. If a family is saying, you know, our faith is really important to us, and we're not sure our faith allows what you want us to do, then we might be able to say, well, is there someone in your faith community who can come and be part of this conversation? And maybe they can help us figure out which parts of treatment are acceptable and which parts are not, and maybe there's a way to move forward that gets your child what they need while also honoring your beliefs.
[00:12:42] Bry Moore, PhD: And to add to that, Amber, thinking about how we're engaging with parents' reasons in practice. I mean, I think because this is one of our conclusions in the paper, it can draw our attention to cognitive and social biases that are at play in this space. So, are we treating different families reasons differently? Are we treating different kinds of reasons differently based on our own or perhaps our profession's biases toward members of that group or certain types of reasons. And we think that's really important ethically, right?
[00:13:16] Host Amber Smith: Well, I know your research did not get into the reasons offered by a child, but when does a child get to start making some of their own health care decisions. At at age 11, are they old enough to understand and say yes or no?
[00:13:31] Amy Brown, MD: Such a good question. You want to take it? You can go ahead, Bry.
[00:13:35] Bry Moore, PhD: So I'm giving a classically ethics answer. It depends, right?
So there is sort of this space where we recognize that children are starting to be able to engage in decisions in what we often call developmentally appropriate ways. Historically we haven't included children. They don't have a voice in their own health care decisions very often, or in a very strong way.
We talk about the spectrum from informed consent, where someone is viewed as sort of a fully capacitated competent adult who can receive information, provide information, and make decisions in, in this way about their own health care. We don't typically allow children to do that, or even adolescents. And at the other end of the spectrum is sort of just dissent. So if the child is really saying no, what do we do with that? And in the middle there's sort of a range of things, right, where they might be saying yes, but they might not have full information or be able to fully comprehend that information.
So it's a big continuum, and different kids, even of the same age, might fall at different places in terms of both their ability, but also desire or like willingness to engage in decisions. Their family's approach and sort of social contact. Different families want to participate in decision making and have the child involved to different degrees.
So it's really, really complicated. There are certain areas of treatment where children are allowed to make their own healthcare decisions. Those include for sort of reproductive care or sexual health, mental health or substance use treatment. Amy am I forgetting any? I think those are the main areas, usually, that most states allow.
[00:15:20] Amy Brown, MD: Sexual health that's not reproductive, like treatment of STDs, (sexually transmitted diseases.)
[00:15:24] Bry Moore, PhD: Yeah. So those are areas where children do have the ability to make decisions and seek care without the involvement of a parent or caregiver to make those decisions for them. So, yeah, it's complicated.
[00:15:37] Host Amber Smith: It sounds like their reasoning matters though, too.
[00:15:41] Bry Moore, PhD: Absolutely. I think it can matter tremendously.
[00:15:45] Amy Brown, MD: Yeah, it's a really interesting thing because we often use reasons as part of an assessment of someone's decisional capacity. So we assume adults have decisional capacity. Some children may, especially older teens, may also have adult like decisional capacity. But part of assessing that is, why do they want to do what they want to do? Can they explain to you what will happen if they do what they want versus what you're suggesting? If those are different things, and be able to give sort of a coherent rationale for why they want to do that.
And yet in in pediatrics, it's not clear that those reasons change doctor's assessments of whether or not something is permissible.
[00:16:29] Host Amber Smith: Well, this is fascinating, and I appreciate both of you making time for this interview. Thank you.
[00:16:34] Bry Moore, PhD: Thank you for the opportunity.
[00:16:36] Host Amber Smith: My guests have been Dr. Amy Brown, an associate professor of both pediatrics and of bioethics and humanities at Upstate, and Dr. Bry Moore, an assistant professor in the Department of health, humanities, and bioethics at the University of Rochester. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe with sound engineering by Bill Broeckel and graphic design by Dan Cameron. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please invite a friend to listen. You can also rate and review "The Informed Patient" podcast on Spotify, Apple podcasts, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.