Ethics of Harm Reduction in Pediatrics

Transcript

Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric healthcare information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.

Welcome to Talking Pediatrics, I’m your host Dr. Kade Goepferd. Today’s segment, A Question of Ethics, recognizes that pediatric clinicians do ethics every day. And our guest host, Dr. Ian Wolfe, director of ethics, offers helpful guidance for pediatric clinicians navigating those everyday ethical issues.

Ian Wolfe: Welcome to ‘A Question of Ethics’. This is Dr. Ian Wolfe, the director of ethics for Children’s Minnesota. Today we’re going to be talking on the ethics of harm reduction in pediatrics and joining together with patients and families and pediatrics can present challenges, particularly when it involves convincing adolescents to follow medical recommendations. There are times when less than ideal compliance to a care plan is undertaken, and this can leave clinicians in a confusing situation where they may not know what to do, where they are unsure how to do good for the patient and respect the adolescent’s ascent and descent. And this can lead us to having to consider a least-worst option or path forward. On this episode, we will talk to clinical ethicist Joel Wu, who will talk about the ethical considerations of taking a harm reduction approach to these clinical situations. Professor Joel Wu is a center for Bioethics clinical Ethics assistant professor and a senior Lecturer in the division of Health Policy and Management at the University of Minnesota School of Public Health.

Professor Wu’s primary role is as a clinical ethicist for the M Health Fairview System. He is a co-chair of the University of Minnesota Medical Center’s Ethics Committee. Professor Wu also teaches courses at the intersection of clinical ethics, public health ethics and public health law. Previously Professor Wu conducted health policy research and development at the National Academies of Sciences and Engineering and Medicine at the Institutes of medicine, now the National Academy of Medicine, and as a research associate for the former Engelberg Center for Healthcare Reform at the Brookings Institution, and completed post-doctoral fellowships at the program in bioethics and professionalism at the Mayo Clinic in Rochester, Minnesota. And here a fellowship in clinical ethics at Children’s Minnesota and Abbott Northwestern hospitals. Professor Wu holds a JD and MA in bioethics from Case Western Reserve University and an MPH in epidemiology from the University of Minnesota. Thanks for joining us, Joel.

Joel Wu: It’s great to be here.

Ian Wolfe: What prompted this question, Joel, is that I get a lot of consults from clinicians taking care of adolescents, both inpatient and outpatient, and they’re often concerned they have an adolescent patient who they’re either refusing a medical recommendation or care plan or not following the medical recommendation optimally. And you wrote an article for our spring 2023 Journal of Pediatric Ethics on harm reduction, and this comes up sometimes in these cases. Can you tell us a little bit about what harm reduction is and where did it come from?

Joel Wu: Sure. So harm reduction is the idea that in certain circumstances you may not be able to completely avoid some of the harms without some competing burdens on a particular person or a patient. Where this really arose and where it has the most clarity and historical support is in the management of people with substance abuse disorder and specifically IV drug use. The best example that I think is the most accessible to folks is the issue of using clean needles. You’re not stopping a person with substance abuse disorder from using IV drugs. That would be the optimal outcome. But the thing is, in a lot of circumstances, people are unable or unwilling to stop their drug use. What you can do is you can give them clean needles, so it minimizes or completely eliminates the risk of spreading infections with using dirty needles. And so that is harm reduction. You are avoiding a particular harm, but it’s still not the optimal outcome. And it’s because in a lot of cases, achieving that optimal outcome is not possible either circumstantially or in some cases because of competing burdens on that particular person. So it really is just sort of, what the term means, is you’re minimizing harm as much as you can without getting rid of all of it.

Ian Wolfe: Sure.

Joel Wu: From the ethics standpoint, it’s because we think that it’s better to avoid some harm than to try to get rid of all the harm even though it might cause other problems.

Ian Wolfe: And so speaking then in healthcare and specifically in pediatrics and say adolescents, in what types of situations would a harm reduction approach be implemented?

Joel Wu: So harm reduction I think has a lot of value in circumstances where enforcing a particular plan of care or requiring certain behaviors is a really big burden on the patient and is a significant burden on their autonomy and may also cause a particular lack of trust. They may actually reduce the overall effectiveness of the long-term goal or the long-term plan of care. So you want to have an optimal medical outcome, but it requires a significant amount of coercion or restraint or force. You may end up with an optimal medical outcome in a narrow sense, but have done so much harm by putting such a significant burden on the patient’s autonomy that it’s both in and of itself a problem. It has also resulted in a loss of trust by the patient.

Ian Wolfe: There’s a lot to consider about the patient’s autonomy even as an adolescent who’s not “legally competent”, but we want to respect their bodily autonomy. Also weighing in future trust in health care, but at the same token trying to do good for them in the meantime. What specific types of cases have you used of harm reduction approach or have you recommended a harm reduction approach as a clinical ethicist?

Joel Wu: The most frequent that arises in a pediatric setting have to do with usually adolescents with an eating disorder. The classic cases are anorexia, but it can involve other kinds of restrictive eating or restrictive intake, even cases where it’s just narrowly restricted fluid intake or particular kinds of foods. Here, tension is really in between involuntary hydration and nutrition towards an optimal medical outcome or allowing some degree of harm as a result of that restricted intake. And so the idea here is that even though we could potentially achieve optimal caloric intake or optimal fluid intake and also ideally achieve an optimal kind of weight, the enterprise and the process of involuntary hydration nutrition is both in and of itself really coercive and really burdensome. It’s a significant intrusion on a person’s autonomy and also it could potentially undermine trust in the care system and also future effectiveness of the actual eating disorder directed therapy.

The thing that’s sort of important to focus on here is that, especially in a pediatric setting, the patient’s autonomy and their interest in being able to have control over their body and direct their lives on the terms that they think are the most important to them is not a binary thing, and it scales. In addition to that, just because a patient has an eating disorder, that doesn’t mean that they don’t have other interests in particular to not be involuntarily treated. So how do we balance that patient’s interest in not being involuntarily treated while dealing with the medical issue, and in addition to treating the medical issue, creating further opportunity by essentially keeping them alive so that they have more opportunity in the future for that disease directed, that eating disorder directed therapy?

Ian Wolfe: Yeah, that’s a lot to balance. On the one hand, you’re concerned about what I think is considered a psychological condition that we think might impact their decision making. They’re also an adolescent, so we know that there’s not prefrontal lobe development completely yet. We want to obviously do good for them right now and sustain their life and nutrition is a part of that clear thinking and survival. On the other hand, you’re looking at the future trust in the healthcare system of the future patient, but also what harms are you going to put them through for this particular medical goal at this particular time.

Joel Wu: Another consideration is also what kind of role and what kind of obligations do the clinicians have? And so regardless of the kinds of rights and duties that we have to the patient and the interest that patients hold, the other question that I think is worth asking clinicians is what kind of clinician do you want to be? And so that’s more of the virtue ethics question, which is what does it mean for you to be a compassionate and caring clinician? And another way of thinking about it that I like to use in my practice is a narrative approach, which is to say, if you’re thinking about this patient’s particular story and you as a co-author in this particular chapter, what kind of co-author of what kind of chapter do you want to write?

Ian Wolfe: On one hand you’d say the optimal medical treatment is to get this person nutrition. The way we can do that is by restraining them in bed and putting a feeding tube against their will, and that will achieve our medical goal. But to do that, you have to override their bodily autonomy or integrity, hold them down, and actually you are doing harm even if it has some medical goal that’s a benefit. On the other hand, allowing them to avoid some food and intake also has some harm in potential long-term malnutrition, but might have some benefits in building trust and respecting their autonomy. So it sounds like there’s two different pathways that each have their own significant tradeoffs.

Joel Wu: And I think one of the things that’s thinking about here is that the tradeoffs aren’t necessarily reducible to specific concepts, right? Because it’s not just about optimal medical outcome and then the intrusions on autonomy. That’s also about how you do it. What’s worth focusing on here is with harm reduction, that’s more of a question of what are the kinds of negotiations and tradeoffs and how you do it that you’ll tolerate. So instead of holding a hard line about a certain amount of weight gain, maybe we’ll say we’ll accept a lesser amount of weight gain while also ensuring that there’s more opportunity for the patient to be able to participate on their terms. So even though it’s not as much weight gain as you would want, even though it’s more exercise than we would usually want to see in this particular kind of patient, that might be acceptable as a suboptimal outcome. But because we’re also being able to respect that patient’s autonomy and also preserve trust. So in the enterprise of trying to preserve trust, in the enterprise of trying to respect in adolescence a burgeoning autonomy, we’re saying, “Okay, this might not be the best medical outcome, but we’re still avoiding some harms and preserving trust”.

Ian Wolfe: So I get called from other clinics, aren’t eating disorder clinics, and oftentimes clinics where there’s a treatment regimen you must follow, specific things or there’s activities that are restricted, such as like a hematology clinic where children are on blood thinners to prevent clots in their legs. Is that somewhere where a harm reduction approach could be applied?

Joel Wu: The circumstances where harm reduction, I think, are the most relevant is when there’s a suboptimal outcome that isn’t a serious irreversible kind of harm. And so you can tolerate a suboptimal outcome if it’s not a serious kind of irreversible harm where it’s loss of life, loss of limb, or some sort of irreversible outcome. So with harm reduction, essentially what you’re doing is you’re tolerating a certain level of harm, but it still provides some degree of an open future for recovery.

Ian Wolfe: So when should a harm reduction approach not be used?

Joel Wu: I think harm reduction is not going to be relevant if there’s a potential risk for an irreversible and serious harm. And I also think that harm reduction is not appropriate if there isn’t an effective means of actually reducing that harm. With the classic example of clean needles, clean needles is an effective way of avoiding IV drug use related infections. If there wasn’t an effective way of reducing that, then it would not be defensible either. In order for it to be ethical, the compromise has to be effective in minimizing the harm. So the best case scenario for harm reduction is when the way of avoiding harms is in and of itself effective, but that the suboptimal outcomes are also not irreversible.

Ian Wolfe: So we talked a little bit about this, but I just want to clarify for our listeners, what are the ethical tensions involved when you undertake a harm reduction approach? You, in the article in General Pediatric Ethics, you list out four considerations from Bianchi et al and their article in the American Journal of Bioethics.

Joel Wu: The primary tension here is between intrusions on autonomy and best interests from a principlist analysis, which is to say there was always tension between the best interest from a medical standpoint and the intrusions on autonomy. And what harm reduction is trying to do is balance those two. The other important considerations, at least I think from the Bianchi paper that are also compelling to me, is the virtue ethics question, which I gestured to earlier, is what it means to be a compassionate care provider and clinician in these circumstances. Because I think it can be fairly argued that a compassionate approach may not necessarily be the most burdensome approach. The other is the question of not just narrowly the medical outcomes, but the long-term goals of the patient. Which is to say trust also matters because particularly when you’re talking about psychiatric conditions, the patient’s trust in their participation in their psychiatric disorder-directed therapy isn’t reducible to the medical. And so even though we could potentially keep a patient’s body alive and have them in this case to be more nutritionally stable, you may have actually done a lot of harm to their opportunity to benefit from the psychiatric therapy.

What’s the big picture? What are the tradeoffs in particular with a psychiatric condition, their opportunity to benefit from future psychiatric care?

Ian Wolfe: What are some things to consider for pediatric clinicians with a difficult situation like the ones we discussed here, where a harm reduction approach might be helpful?

Joel Wu: I think there are the circumstances where you can see that there’s going to be significant burden on a patient’s autonomy if you try to achieve an optimal medical outcome. And you also see that enforcing that is likely to result in a particular kind of loss of trust. And you also have a situation where you might be able to have negotiations or compromises that may not be medically optimal, but still effectively avoid some harms, and at the same time, still are able to provide a future opportunity for the actual disease-directed therapy.

Ian Wolfe: You talked about the ethical considerations for clinicians potentially facing a case where this approach might be useful. What things should they consider about engaging in this approach?

Joel Wu: Things that consider aren’t just about being able to propose a harm reduction plan of care under certain circumstances. I think the process of negotiation with patients and their parents can result in, I think, a fair compromise that simultaneously reduces harm and builds trust. So if you have a situation with a patient, a patient’s parents, and a clinician where you’re trying to achieve a particular medical outcome, but it has the risk of a significant burden on autonomy, go through the process of negotiation, you might be able to stumble upon a compromise that reduces harm, provides future opportunity and sustains trust.

Ian Wolfe: That’s a really good important thing to take away. Who should clinicians contact if they would help navigating a situation where harm reduction might be beneficial?

Joel Wu: Well, I mean, it’s a self-serving recommendation, but I think ethicists are definitely a strong support social workers. I think depending on the circumstances, a valuable resource might be advocacy groups for a particular condition. So for example, advocacy groups for people who are managing their own eating disorders.

Ian Wolfe: Well, thanks so much, Joel. This was really helpful information in a really complicated topic that I think will really help clinicians who find themselves in these situations navigate them to the best outcome medically for their patient with the least amount of harms.

Joel Wu: Great. Thanks for having me Ian.

Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver and Patrick Bixler. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.