Good afternoon, everyone. It's a real privilege to be with you here today. We're going to shift gears a little bit to round out the rest of our panel into talking about clinical ethics. And there's many pathways into clinical ethics. Lots of clinical ethicists start out as clinicians. I came into ethics by way of critical care nursing, where I found myself repeatedly confronted with very ethically challenging situations with my patients. And it seemed like we needed a lot of help to navigate these situations. And I wondered what sorts of ethical principles might be able to assist. Back in those days, there weren't robust clinical ethics programs. So it's exciting that there are today. And I'll be talking about how much is too much ethical considerations and decision-making in pediatric critical care neurology. I have no disclosures. Some learning objectives for the next 15 minutes are to briefly discuss the role of parents as decision-makers, to identify professional standards around potentially inappropriate treatment for situations where conflict might ensue around decision-making, and to describe one ethical framework that can help guide decision-making when you find yourself in a gray zone. So briefly, parental authority. We give parents in the United States especially quite wide latitude in decision-making. And there are many good reasons for this, some of which are the fact that parents are tasked with acting in their child's best interests in terms of health care as well as other social goods such as education. Parents are responsible for their child's welfare. In most cases, parents love their children deeply and arguably are the best situated to decide what's best for them, especially as compared with a third party. The interests of children are inextricably linked with those of their parents. And they really derive their identity within the family within which they grow and flourish. And importantly, parents have the most at stake along with their child in any treatment decisions that are made for their child. And they will live with the consequences of medical decisions. So those are just a few of the reasons why we defer to parents so widely. Most often, as we know, treatment decisions are made through shared decision-making. They're arrived at mutually between parents or surrogates and the health care team. But sometimes, parents might opt or ask for a course of treatment that clinicians are quite uncomfortable with and have to sort of figure out whether this is a treatment decision that should be accepted or perhaps not. So one framework that I wanted to talk with you all about this afternoon is called the zone of parental discretion. This is an ethical framework that was developed by a bioethicist named Lynn Gillam. And it's a framework that we use quite often at Boston Children's Hospital. And I've heard from clinicians over the years that it is helpful, although no ethical framework can solve all of our moral dilemmas. But at least some can maybe give us a little helpful guidance. The zone of parental discretion incorporates two widely accepted guiding principles in pediatrics. The first is the best interest standard, which I'm sure we're all quite familiar with. This is an aspirational principle seeking to choose the course of action that is the absolute best course of action for the child. The second principle is the harm principle, which I think of as a limiting principle and is used as a limiting principle in this particular framework. The harm principle identifies a threshold below which parental decisions will not be tolerated. It's a threshold of harm that kind of is the floor, if you will, of parental decision making where we need to intervene and perhaps not respect the parent's decision. So in the middle between the child's best interest and the harm principle is the zone of parental discretion, which can be thought of as the ethically protected space where parents can legitimately make decisions for their children that are perhaps suboptimal in the evaluation of clinicians, but they don't quite reach that threshold of harm. And this framework would instruct us to accept those parental decisions that fall within the zone, but continue to advocate for the course of action that the clinician believes is best for the patient. There are five questions that accompany this framework that might help you to apply it in practice, and these include, of course, what is the parent's wish or decision? What would be the effect on the child of carrying out the parent's decision? Are the effects so bad as to constitute significant harm to the child? And importantly, what would be the effect to the child of overriding the parent's decision? Because we all know that while we might see a parental decision as harmful, there are also harms associated with override that shouldn't be overlooked. And then to evaluate if there will be negative effects to the child, would overriding represent greater harm than the harm expected from honoring the parent's original decision? So those are some questions that might help you in applying this particular framework. So of course, this doesn't get us out of all of our troubles, because we will always see things differently. And we are dealing in ethics and in much of clinical medicine with very subjective and value-laden concepts. And so that will persist, and we will still have to figure out how to negotiate those differences. So moving on to talk a little bit about potentially inappropriate treatment and professional guidance around situations where there's conflict over treatment decisions. I would like to talk briefly about the ATS Multi-Society Policy Statement, and then again, briefly about an Ethics Committee Policy Statement from the Society of Critical Care Medicine's Ethics Committee. So in 2015, the American Thoracic Society published a multi-society statement offering guidance on how clinicians can respond to surrogate requests for potentially inappropriate treatment in intensive care units. And some important definitional guidance came out of this policy statement. One was around what we sometimes refer to as the F word in ethics, which is futility, which has had a very long, storied, complicated history. The statement recommended that the term futility should be reserved only for interventions that are physiologically futile. That means interventions that simply will not work. One example that the guidelines offer is not attempting CPR for a patient who is in rigor mortis. It would be futile, literally. For all other interventions that are technically feasible, that could actually work, the statement recommends the language of potentially inappropriate treatment. And this is defined as treatments that have at least some chance of accomplishing the effects sought by the patient. But clinicians believe that competing ethical considerations justify not providing them. Interestingly, the statement doesn't delineate precisely which competing ethical considerations ought to be taken into account or how they should be weighed. But this was a definition put forth for how we should think about potentially inappropriate treatment. And then lastly, the ATS guidelines offer a process-based dispute resolution process, which is a seven-step process that involves enlisting expert consultation to help aid in achieving a negotiated agreement, providing clear notification of the process to surrogates, obtaining a second medical opinion, review by an interdisciplinary committee. This would typically be an ethics committee in the hospital setting, offering surrogates the opportunity to transfer care to an alternative institution, informing surrogates of their right to pursue extramural appeal, and then finally, implementing the decision that resulted from the review process. One thing I particularly like about the ATS guidelines is that they rightfully acknowledge that there are often, I would say, situations where the patient's clinical instability precludes undertaking the seven-step dispute resolution process. If your patient is rapidly destabilizing, you just don't have the luxury of undertaking such a deliberative process. And so they offer some questions that clinicians can ask themselves in a time-pressured situation to illuminate possible moral blind spots before deciding not to offer the intervention. And these include asking, am I certain that the requested treatment is outside the boundaries of accepted practice? What are the consequences to the patient, the surrogate, the team, or the institution as a result of implementing this decision? Would I be willing to have the rationale for my decision publicly reviewed? And the last one incorporates important equity considerations. Am I sure that sex, race, socioeconomic status, ability to pay, or other psychosocial factors are not entering into my decision? So moving on to the policy that the following year, policy statement that was published by the SCCM Ethics Committee, was really an attempt to provide a clearer definition of inappropriate treatment. Because as I said, we've talked about competing ethical considerations, but what are those? How do we weigh those? It's still difficult. So the SCCM put forth two criteria for when an ICU intervention should generally be considered inappropriate. And this is when there is A, no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting, or B, no reasonable expectation that the patient's neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment. It seems apparent to me that the first criterion embeds considerations of resource allocation, because treatments very rarely are physiologically futile. And often, it's not so much about whether a treatment will work, whether the dialysis will actually work, but more is it an appropriate use of very limited ICU resources. The second criterion, the neurological criterion, is particularly relevant for this panel and this group. I think that while it's not unreasonable, I think, to consider whether or not the patient can perceive the benefits of treatment, I do worry that this could potentially apply a values-based quality of life judgment on the use of ICU resources. And as we all know, many families value the survival of their child, irrespective of their neurological incapacity, and find their lives meaningful, and would wish to pursue all available life-sustaining medical treatments or other treatments that could support or improve their child's health. And this can, of course, also involve religious values, cultural values, but sometimes not. Sometimes it's just love and personal values. The statement does note that clinicians need to recognize the limits of prognostication, that there can be a lot of uncertainty and humility, as Mark mentioned, would be very important. And I'd be really interested to hear how folks think about these criteria with respect to inappropriate treatment. But ultimately, I find this policy statement to be incredibly important, an important contribution to the discussion around these kinds of issues, which are so complex and fraught. And I feel that it has also furthered the dialogue about what are appropriate limits to technology, and how should we define those, and whatnot. So I wanted to conclude with just a brief case scenario to try to ground our thinking. This is a three-year-old female who suffered a traumatic brain injury as a result of a near-drowning incident. She's now in a minimally conscious state, experiencing acute renal failure. She's been in the PICU for six weeks. And her PICU course has been complicated by multiple cardiac arrests, severe autonomic storming, which I know that language now needs to be corrected to paroxysmal sympathetic hyperactivity, thanks to Erin. And she's also experiencing increasing instability on intermittent hemodialysis with consideration for continuous renal replacement therapy. The team is worried that the patient is actually at or nearing the end of life. And they recommend to her parents that foregoing life-sustaining treatment and redirecting the goals of care to a focus on comfort would be in the child's best interest. But the parents are adamant that they want all treatments to be continued. And as we often hear, that they want to leave no stone unturned. So if we think about this case, you could think in your minds as you're listening, what are some of the ethical considerations that you would be thinking about as a clinician? And how might you weigh those? And I like this graphic because it demonstrates the varying weights that we might apply to different ethical considerations. Some that I thought of were we would be thinking about parental authority and the importance of respecting parental authority. Also patient and family values, including any cultural or religious values that might be informing the family's decision making. Ethical principles of beneficence and non-maleficence would be at the fore. So we would be wanting to promote the child's best interests while also avoiding harm. Quality of life concerns, resource allocation, and of course staff moral distress, which I think is one of the hardest ones because clinician moral distress is so important. But it is so difficult to figure out how to factor that in to these kinds of deliberations. And then lastly, turning back to the zone of parental discretion, we're at time. So I'll kind of do this briefly. But just thinking about where might we place the parent's decision for continued life-sustaining medical treatment within this framework. I doubt many clinicians would place it in the center, would think that this would be in the best interest category. But do you think it would fall below the harm threshold? I'm not sure. But it would be interesting to discuss. In summary, parents have wide but not unlimited discretion in medical decision making. An ATS multi-society policy statement and a companion SCCM policy statement provides guidance on responding to requests for futile and or potentially inappropriate treatment. And the zone of parental discretion is one tool that can help contextualize the parameters around decision making. Thank you.

pediatric critical care

ethical frameworks

zone of parental discretion

clinical decision-making

parental authority