My name is Wynne Morrison. I am a pediatric intensivist and palliative care physician in Philadelphia. I'm going to be leading off our session on personalizing decision making with my co-speakers who will introduce themselves when they come up. My, I'm going to start with talking about personalizing clinician directiveness in supporting patients and families in the ICU. And this is a topic that has become very important to me over the years as I see how we sometimes get these things wrong in both of my fields. My objectives, I'm going to describe a continuum of clinician directiveness and shared decision making, discuss individualizing approaches to guidance, and differentiate the concept of a goal from the concept of an intervention. We all know in the ICU that the more we can do, the more choices patients and families are facing. This is a good thing. It's because we're pushing the envelope of medical care and we're improving outcomes in many cases. But we're also, we can prolong life so well, oftentimes past the point of benefit to the patient or family. And that leads to a need for the patients and families to make more choices and us to support them in that. Chris Feutner and I have written about this as the idea that it becomes a burden the more that we can do, because there's no longer simple choices. There's not a binary do everything, don't do everything. And there's also a problem of the just keep going, just keep going can lead to more harms, even if it's sometimes the easiest thing for a family to say. Some of our panelists today participated in a shared decision-making statement that the Society of Critical Care Medicine contributed to defining shared decision-making when we work with families. And the points I want to emphasize here are that we focused on shared decision-making being collaborative, working together, using the best scientific evidence to guide the shared decision-making that's often contributed by the health care team, but having it centered on the patient's values, goals, and preferences. So that's part of the reason it has to be shared, because you need both of these parts. You need the medical team's expertise, and you need to know what the patient's values, goals, and preferences are. In building on this, well, Alex has written about how we do shared decision-making, and that there is a spectrum. There's a physician-driven decision-making that is sometimes appropriate and sometimes desired by the patient and family, and then there's a spectrum all the way to patient- or agent-driven decision-making, which is also sometimes appropriate and sometimes desired by the patient or the family. And Alex is going to talk more about this range of the towards physician-driven of the idea of informed non-dissent next. In thinking about this spectrum, and when we talk about physician guidance or control or ownership of the decision-making versus patient guidance or control or ownership, I realize there's such a focus on the control when we frame it this way. And ethical decision-making often falls into that. Is it like autonomy, justice, beneficence? How does this all fit? You know, you often hear people say in frustration, like, well, the pendulum has swung too far towards autonomy now. Every time I hear someone saying that, I understand the frustration, and what they're feeling, and the circumstances they're thinking about. But I also feel like it's almost the wrong way to think about it, because really, it's not about control so much as it is about the relationships and the human story, the prior experiences, the evolution over time. How do you work with the patients and families with that relationship? And we all know that the doctor-patient relationship, it's a subcategory of human-human relationships. The patients are humans. The doctors are humans. They are quirky. They're not going to be consistent. They're going to have different ideas, and maybe we think they should. I could convince my husband to always think the way I did. Life would be easier, and I can't, and I'm certainly not going to be able to for all my patients. The clinicians are humans, too. And I think sometimes we have to remind ourselves that we come out with our own opinions, our own biases. And there have been plenty of studies that show that depending on where you live as a clinician or what your background is, you may make different recommendations to patients and families in the same circumstances. So it doesn't mean that is wrong, but we should train ourselves to be more aware of what our own biases are. And in thinking about how we do shared decision making, I think one really important consideration I had was, well, how can we be more directive? Now, this is not about taking control. It's not about being parentalistic and saying, I get to decide. But how do we be more directive in a helpful and supportive fashion? And so I think there's a spectrum of directiveness as well, where a low degree of directiveness is just simply offering neutral choices. And sometimes that's appropriate. Sometimes there are a variety of medical options that all make sense, and you offer them to the patient or the family. And you say, what do you think? What do you want? But there's other circumstances where maybe it's a good idea to be a little bit more directive, where you present those options with a recommendation. And that recommendation may be based on what you think about what's most likely to succeed medically. It may be based on what you know about that family. I'm going to talk more about that in a minute. Sometimes we make a strong recommendation and have a high degree of directiveness. Alex will talk more about techniques for this. And that's when we present things strongly or as a default, where we say, this is probably the way to go. I'll give some examples as well. And then there actually is, I think, a near complete degree of directiveness, when maybe there are choices, but we're not really going to offer it. That's going to be, surgery doesn't make sense here. You're not an ECMO candidate, not a transplant candidate. There are some times that we take a much more directive approach, and we should try to make sure we're appropriate and justified when we do so. But thinking about these things is important, because sometimes you run into a circumstance where you hear the clinicians expressing their frustration, like, ah, I can't believe that family chose a trach. Oh, no, why did they choose that? But then you're like, well, you offered them that choice. And you said, here are your choices. Do the trach. Don't do the trach. How did you offer that? Did you tell them you thought that might be a bad choice? They shouldn't be just expressing those frustrations outside the room without figuring out a patient-centered way of explaining those feelings to the family when they are making that choice. So when you think about where on the spectrum of directiveness we fall, I think there's so many things that can go into whether you ask for the patient or family's choice or thoughts or whether you guide them towards a certain choice. And there's many, many, many different vectors that would play into that, the certainty of the outcome, how long you've had to assess their trajectory, the burden of disease, and the therapies. The one I want to focus on is the patient-family desire for guidance, which is a very important one, and also a little bit of thinking about exploring the patient and family stories. So the patient and family desire for guidance really can play into it. And I've had experiences of times where a family, I've heard them say to a clinician, I need you to make the best medical choice you can. I, for religious reasons, emotional reasons, whatever that is, they were very explicit. Like, I don't want to own this decision. And I've even heard clinicians say back to them, like, oh, no, I need you to say that you're OK with us not doing this, you know? And that's, you know, when the family's asking you for guidance, they need it. And you know this, that you approach a family very differently if, say, you've made a plan to withdraw a ventilator. If the family says to you, like, well, I think it'll work better for my child if we take away the dialysis before we take away the norepinephrine. Why don't we do it that way? Which I've had a family say to me, you know, then that's a different conversation than the family is saying to me, I can't believe this is happening. I don't think I can even be in the room. The logistics are different. How you're going to help that family is different. Many of you may have heard Scott Halpern talk in the past as a keynote speaker at an annual Congress a few years ago about defaults and nudges. And, you know, he's done a lot of research in this area. And it's the idea that using behavioral economic theory of, you know, like, how do we get people to make the decisions that are maybe best for them or best for their health? Like, how do you get someone to contribute to their 401k? How do you get them to pick the healthier food? And just in case you're thinking that they're just manipulating patients, there's also studies ongoing of how do we get clinicians to do the right things and nudge them to do that? Like, you know, request a palliative care consult at an appropriate time and things like that. I want to think a minute about what Scott is doing, which is amazing work. But also think about how do we know how we say things can affect what families choose. And just a couple of examples. In one hypothetical scenario, parents were more likely to choose neonatal resuscitation when it was presented as 25 out of 100 survive, as opposed to 75 out of 100 patients in similar circumstance die. It's the same numerically. The presentation is different. Another example, when patients were presented with real advanced directives they were being asked to fill out, their choices were affected by what option was presented first. And the fascinating part about them is then when it was explained to them that they had been manipulated and different options had been put first, they still stuck with the choices they had made. So you know, they were like, yeah, yeah, I feel the same. I made that choice. So I want to take a think for a second about these nudges and defaults. And what if we personalize the nudges and defaults to nudge the patients and families towards their own goals? And I had to put the caveat in here, they're achievable goals, because sometimes there are goals that we simply cannot achieve. We can't get to their medically, they're getting towards that not feasible, potentially inappropriate range. And in those cases, we have to do the hard work of saying, I wish that could happen. Here are the things, you know, that can. So how do we do this? And for me, you have to start with the understanding and curiosity. You have to learn about your patient, that human being. And that starting with curiosity, you have to think about what are their hopes? What are they hoping for? What are their expectations? Sometimes those are different. Just because they're hoping for a miracle, they may not be expecting that. And talking through that can take time. And I met plenty of families who can emphasize they are absolutely hoping for a cure, but at the same time, they're calling the funeral homes to start planning. People can hold more than one thing at once. Yet you explore their worries, you explore their prior experiences, you explore their stories, get to know them. Who are they? All of this plays into their goals and values, and what are their goals and values. Once you understand their goals and values and have explored them, then you can start planning the interventions. And what I want to really emphasize here is that the question is not, do you want CPR? It's not that useful a question. The question is, what do you want? What are you hoping for? And then you help them think about, is CPR something likely to achieve that? And it might be different this month than last month for that same patient. I might want CPR if you might have me all better in two days, but not if it's going to lead to a lifetime of disability. So these things are different. So examples of the goals we should be discussing are figuring out the big picture of what they want. Cure, prolonging life, making sure everything's been tried, avoiding suffering, being at home, making sure a patient doesn't feel alone, honoring the relationships of the patient. Sometimes that hope is all about honoring who I am and who my loved one is. It's I have to have the hope. And if you understand that, you can better talk with them about the possibilities. Examples of interventions that you as the medical team are going to help them shape to their goals are all the things we do. And you don't necessarily always offer all of them based on what you know about the patient and what their chances are. So just a couple of examples of language that I'd love to give. And I have to say, I don't always get this right. But how do we do a patient-centered, goal-focused recommendation in a gentle way? Given what you have told me about your father, it might make sense to. That's a way to present a default. It's based on what you know about the patient and the family that you see a medical option based on that that you're recommending. But it might make sense to doesn't mean that it's the only thing you're going to offer. You're going to allow some room for deliberation and discussion with them. Another example, it sounds like it's really important for you to blank. Are there other things you are hoping for? I'm not negating the first hope, even if I'm worried that that one might not be achievable. But starting to explore what are more. What are more hopes? What are things? And this is really hard if you've had an expression for something that you think is highly unlikely to be achieved. And I'm not very good at it, but I wish we could do that too. And avoid following it immediately with a but. Don't say, I wish we could, but we can't. It's like follow it with a pause. Follow it with more listening and understanding. And maybe they actually already know that this may not happen. And you can express your worries. But your worries are more aligning because they are worried too. Take it out of any sort of disagreement of we're saying this, you're saying that. So in conclusion, and I'm going to turn it over to Alex, guiding and directing care can be both supportive and patient-centered. The medical team should feel comfortable making recommendations, particularly when aligned with what they know about the patient. And patients and families need support when making these tough decisions. You need to help them feel OK with themselves and that they are being true to their values when they are making these really tough decisions. And thank you. I'm going to hand over to hear some thoughts from Alex.

personalized clinician directiveness

shared decision-making

patient-centered approach

ethical considerations

doctor-patient relationship