- What do we mean by futility?
- When clinicians label a treatment as “futile”, they usually mean that they don’t think the treatment should be provided. Often, this is because the treatment involves considerable resource use for people who they don’t think will achieve a quality of life that they consider meaningful
- However, our values and biases play a big role here. Clinicians often underestimate the quality of life that people with disabilities experience, which can lead us to deny treatments that are within a patient’s goals of care. It’s not our role to define what constitutes a life worth living; that’s for the patients to define for themselves
- Definitions per the American Thoracic Society (ATS) Guidelines
- Futile Treatment: an intervention that cannot achieve its intended physiologic goal, such as antifungal medications for a heart attack
- Potentially Inappropriate Treatment: treatments that have a chance of achieving their intended goal, but clinicians believe there are are reasons that the treatment should not be provided
- Ethics analysis
- Non-Maleficence: “Do No Harm”. We shouldn’t provide interventions in which the harms clearly outweigh the benefits
- Autonomy: Autonomy is a negative right; capacitated patients have the right to decline treatments, but don’t have the right to treatments that aren’t being offered
- Justice: Requests for and provision of potentially inappropriate treatments takes time and resources. These certainly guide our moral intuitions, yet usually take a back seat to the principles of autonomy and nonmaleficence
- Moral Distress: Requests for potentially inappropriate treatments can cause moral distress for anyone caring for the patient. Our moral intuitions are important for us to listen to and process, and can help us form our recommendations for or against a given treatment. However, we ultimately need to come to an objective decision that honors the patient’s values, which sometimes means putting our qualms aside
- Values: Patient values need to be central in these conversations. By asking about a patient’s values, we can understand why they are requesting certain treatments, and can make recommendations for goal-concordant care and help the patient make a fully informed decision
- Emotions: Emotions heavily shape the patient and family’s decision-making. While it is helpful to understand ethical considerations at play, ultimately the conversations and negotiations that ensue need to address the emotions that underlie treatment requests
- Recommendations from ATS guidelines
- Communication: “Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultation.” Most disagreements arise from communication breakdowns; consider early involvement of Ethics or Palliative Care. Center the patient’s values in the conversation
- Requests for strictly futile interventions: Interventions that cannot achieve the intended physiologic goal should not be provided.
- Requests for potentially inappropriate treatments:
- “Enlist expert consultation to continue negotiation during the dispute-resolution process”
- “Give notice of the process to surrogates”
- “Obtain a second medical opinion”
- “Obtain review by an interdisciplinary hospital committee”
- “Offer surrogates the opportunity to transfer the patient to an alternative institution”
- “Inform surrogates of the opportunity to pursue extramural appeal”
- “Implement the decision of the resolution process”
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Margot: When we last spoke together on At The Bedside, we talked about hope. I feel like we talk most about hope when the family has a lot, and the medical team has very little. We talk about hope when the family of a man in a persistent vegetative state tells us he’ll wake up again, and asks for a trach and PEG. We talk about hope when a patient on 4 pressors loses their pulse, and we run in for chest compressions because the family wants everything done. People don’t always hope for goals that we can easily achieve; people hope and pray and plead when the outcome they want so desperately is on a distant horizon, and getting smaller. I’ve come to see futility as the flip side of hope, and we wanted to explore that with you today. Welcome back to At the Bedside. I’m Margot
Jafar: I’m Jafar
Tamar: And I’m Tamar
Margot: Our guest is Dr. Gabriel Bosslet, a pulmonary critical care physician at Indiana University. He was first author on the 2015 American Thoracic Society guidelines on discussions of “futile” care. His interest in this dates back to fellowship.
Gabe Bosslet: So when I was a fellow, I got a master’s in philosophy, uh, and bioethics, and also did a clinical ethics fellowship as my scholarly work, essentially. And we have chest conference. And so I decided to present on a case that we had at our, one of our local hospitals of a patient who had been intubated with the same endotracheal tube for over 190 days. The patient’s family would not consent to comfort measures and would not also would not consent to tracheostomy. And I went to the literature, what does the literature say that we should do in these situations? And I was astonished to find the most recent societal statement on this was from 1991 from the American thoracic society. And that statement I found to be completely out of step with what we were doing. It talked about, um, you know, not offering, um, treatments that wouldn’t lead to what we called meaningful, what they called meaningful survival, which was not a term that we had used at all. So I sat there and I was like, wow, this is really outta date.
Margot: So he sent an email to the chair of the behavioral sciences assembly at the American Thoracic Society, also known as ATS.
Gabe Bosslet: I said, we’re coming up on 20 years. Maybe, maybe we ought to have another, get another group together to look at this. He said, I agree with you. I looked at the literature and I’ve also asked some folks around here. And do you mind if I send your email along to some peopleto sort of get their impression?
And I was like, yeah, sure, go for it. And so he forwarded my email to like, literally everyone who is anyone in end of life, ethics, and, and critical care medicine to the point were like people that I was like quoted in my chest conference were people that I then re received response email from in regards this for life.
You know, I tell the story a lot to sort of house staff groups to sort of say, look a lot of, especially like fellowship is putting yourself out there and sort of like raising your hand for stuff.
Margot: Today, we’ll be talking about medical futility. We’ll dive into definitions, describe the ethical issues that can arise, and walk through the recommendations outlined in the ATS guidelines.
What do we mean by “futility”?
Tamar: First off, what is medical futility? What does the term mean and what doesn’t it mean?
Gabe Bosslet: Yeah, this is a hard question. So, you know, a lot of people use the word futility to mean basically things we shouldn’t do. I mean, when you, when I’m on the wards or I’m in the ICU, let’s say, um, you know, people will frequently be like, well, we shouldn’t do dialysis here. That’s futile. And I kind of cringe partly because I spent five years of my life working on this paper and, and really specifically defining it. Um, and so when I start to sort of help that whoever is whether it’s a med student, resident, fellow, even one of my colleague attending physicians start to unpack what that means, it gets really messy, right? Um, that, you know, it it’s, they know what they mean. They mean it’s something that we shouldn’t provide, but when you sort of start to unpack it like philosophically and ethically, it gets a lot more complicated.
Tamar: Often, when people say “futile”, they mean using considerable resources or giving aggressive care to people who they don’t think would benefit. For example, patients perceived to be near the end of life, or who have a severe neurologic injury, or who aren’t considered to have a chance of meaningful recovery. But our own values and biases really play into this: what kind of recovery do we think is meaningful? When people say an intervention is “futile”, they often mean that it would result in a quality of life that they don’t think they would want and that they therefore don’t think anyone would want.
But it’s crucial to check those subjective assertions – disability rights advocates and ethicists have pointed out that clinicians are often not accurately exposed to or educated on the real lived experiences of people with disabilities, which leads to a marked underestimation of their quality of life. For example, people live lives full of meaning and joy while being ventilator-dependent or quadriplegic. But the selection bias of seeing people at their sickest or most vulnerable in the hospital can perpetuate our misperceptions and biases. That’s one reason it’s important that the true meaning of the word futility is actually really narrow.
Gabe Bosslet: In the 1990s ethicists and, and the, and medicine written large, really had this gigantic debate in the literature about this word and tried to come to an agreement about what it meant either qualitatively or quantitatively, and frankly couldn’t. And so, so, you know, one of their theses was that this term failed because we couldn’t just get our acts together and, and decide what it meant. And, um, I partially agree with that. I think that it fails because people try to use it as a trump card, um, as a card to sort of end discussions, rather than, um, admitting that when we’re gonna talk about things that maybe shouldn’t be offered, that that’s the beginning of the heavy lifting, not the end of the heavy lifting. So, you know, the way that we define it in the paper was this essentially the same way that the society for critical care medicine defined it in 1997. And that is, you know a treatment that cannot achieve its physiologic goal.
So we’re talking about a really small amount of times that clinicians go to family members and say, we shouldn’t do this. And so, you know, what’s frustrating. I think to people that haven’t spent a lot of time in this world is I think that the definition that we chose is a frustrating one because it’s, it really isn’t as operationalizable as they would like it to be, but that was really by design because that word never really did the heavy lifting that we had hoped it would in the first place.
Tamar: Using the term in a strict sense – physiological futility – helps limit how we impose our values on a decision that should really be about the patient’s values. So in the strict definition, cases that are truly futile are few and far between.
Gabe Bosslet: We had trouble coming up with examples of, of treatments that would fit this. And let me give you the examples that we came up with example one, a clinician refuses to perform CPR on a patient with signs of irreversible death. So you walk into a room and a patient literally has rigor mortis and is cold and, and discolored from death. And that would be an example of a place where CPR would be truly futile. That person has clearly been dead for a while. And the other is a clinician refuses to administer antifungal medications as a treatment for an acute myocardial infarction. Right? These are things where at the bedside we would just be like, yeah, no, you know, we’re, that’s just not something that we do.
Tamar: And since true physiological futility applies to such a small subset of circumstances, we need another term for clinical practice that we don’t think is right for the patient. The group Dr. Bosslet worked with opted for a term that acknowledges prognostic uncertainty in the choices we make and the role that clinician values can play in these discussions.
Gabe Bosslet: Term that I would use sort of ethically in an, in an ethics committee meeting is potentially inappropriate treatment. And those treatments are treatments that have at least chance of accomplishing the effect sought by the patient or surrogate. Um, but clinicians believe that competing ethical considerations justify refusing to provide the requested treatment, including the fact that it’s just a vanishingly tiny chance that it’s gonna do anything. Like it’s not 0% because we never say anything 0%, but it’s so unlikely to work that it’s just not worth providing.
And so the word potentially inappropriate treatment has the word potentially in it, which means that, you know, I, the bedside clinician need to sort of check my assumptions and sort of make sure that what I’m, what I’m calling inappropriate isn’t just my idiosyncratic thoughts and, and my idiosyncratic notions of the good that I’m foisting upon this treatment request. Now, how do I talk about this with families? I don’t find any of this terminology helpful. I don’t find it helpful to say it’s futile. That’s, that’s not a meaning channel term for families and patients. You know, the words that I use with family and patients are, you know, Mrs. Smith, this is so hard. I’m so sorry your husband is so sick. We need to talk about the fact that he’s dying and, and what he would say if he could be here and hear these words.
III. Ethics Analysis
Jafar: So we want to take some time now to dissect why these cases present such an ethical dilemma. It’s not enough to just say, “we shouldn’t do things that don’t work” – there’s really a lot at stake here.
We can start by breaking down how this fits into our primary ethical principles of autonomy, beneficence, non-maleficence and justice. Obviously, we don’t want to do things that may hurt a patient with very little chance of helping them, so beneficence and non-maleficence definitely have a seat at the table. But I’d argue that we need to take it a step further and ask: how could providing potentially inappropriate care harm other members of the clinical staff? How do we think about the moral distress within our treating teams?
Gabe Bosslet: I think disregarding that harm is a disservice to us. That harm is non-zero, right? I mean, it’s not as though we just walk away and it’s done and, and we go about our day. I mean, we like to think that’s the way it works, but it doesn’t work that way. I don’t mean just the physicians we’re talking about the nurses, the bedside, the respiratory therapists who touch this patient, the pharmacists who help around with us, you know, the folks who deliver the food and see these folks every day. I mean everyone sees this and so it doesn’t just live in the physicians. And I think that’s important to point out.
Jafar: Superficially, it may seem like respecting patient autonomy means suspending all of our own feelings. But we shouldn’t ignore our moral reactions; we actually need to really lean into acknowledging the emotions, values, and potential biases we’re bringing to the table. If we don’t acknowledge it, it’s just that much harder to make an objective decision that honors the patient’s values.
Gabe Bosslet: We should push toward those things that we, we think should or should not be provided. It’s just that we should be very measured about how that we do that and include other people to make sure that our, that not only our meaning the individual attending physician, but also our meaning the collective culture within that intensive care unit at that one time doesn’t sort of have a blind spot that they’re missing. Even when there’s a lot of moral distress, you know, we need to be thoughtful about the way that we move forward to, um, operationalizing non-provision of things that patients or family members may want that we think should not be provided.
Jafar: For clinicians who see this all the time, talking about it openly can not only help check our biases, but also be a really helpful form of coping.
Gabe Bosslet: We should, we should talk about it too, right. I mean, we should debrief about it, right. As, as clinicians at the bedside, as nurses, house staff, physicians, you know, everyone, should acknowledge the fact that this is really hard and I’m struggling with this inside. I feel like we’re causing suffering. And when I go home at night and I lay my head on the pillow, I toss and turn about this case. We should be okay with the vulnerability that is required in saying those words to one another because I think it helps us process. It helps some of us process, some of us, it doesn’t help us process and that’s okay. But for a lot of us, that’s helpful in the process, in those difficult, you know, hippocampal emotions that we have.
Jafar: In Western biomedical ethics, autonomy usually sits at the top of our priorities. But this has to be balanced against our clinical judgment of what may happen if we let a patient or family’s wishes go unchecked.
Gabe Bosslet: So we’re not automatons, we’re not technicians, right? I’m not just sort of a machine that sticks endotracheal tubes into someone’s throat. And that the nephrologist isn’t someone who just, automatically puts in dialysis catheters and runs renal replacement therapy. They’re definitively our own sort of experience our, you know, medical judgment as to sort of how things are going, how they’re expected to go, that all plays a part in this. And so it’s really the patient and family members’ autonomy versus our own sense of sort of non-maleficence. Right. We don’t wanna cause harm. That’s what we often fall back to. Oh, that person is suffering. Um, um, beneficence, right. We, we want to do, we want to do good, but also justice, right? So I have a busy ICU with patients waiting the intensive care unit, right? So we don’t often talk about this, but this is this, this is a, a pressure when you’re in an intensive care unit. And so, you know, these all sort of come together and, and crash against each other.
Jafar: It’s worth noting that autonomy, as a right, is most closely guarded as a negative right, meaning patients have a strong protection to STOP certain things to happen to their body. But autonomy isn’t necessarily a positive right–it doesn’t give a patient the right to request things that may bring about serious harm. And often, we worry that the interventions the patient or family request will cause serious suffering.
Gabe Bosslet: This is often how it goes, right? I mean, often the, the conversation outside of the room is, “What are we doing?” It’s sort of the feeling that pushes toward wanting to have that hard conversation with the family rather than provide it. But, you know, it doesn’t necessarily win the day. There’s a balance between what the family wants and what we think should be done. We should advocate for what we feel like is best and should push towards sort of provision of, or non provision of those things that we think are most appropriate.
Jafar: Just as we’re wrestling with difficult emotions in these tough cases, the situation is exponentially harder for patients and families. Understanding patient autonomy in requests for potentially inappropriate care is in large part really about understanding emotions.
Gabe Bosslet: But that autonomy is sort of wrapped in a hard shell of emotive difficulty, right? And that emotive difficulty is different for everybody. It may be guilt, right. We all have the family member who flies in from California and wants you to do everything. And a, a lot of that is guilt given up around the fact that they haven’t been there for their family member, they’re just now seeing them, oh my gosh, how did it get this bad? How did I, how did I miss all of this? Right. Um, so there’s guilt, there’s sadness. They’re just so sad. I mean, of course they’re sad. They’re scared. How am I gonna survive without my mom or dad? What does my life look like now that this possibility that my, my parent, my brother, my son or daughter, oh my gosh, isn’t maybe gonna be here. And so autonomy is the ethical concept, but you’re often not wrestling autonomy, you’re wrestling emotions. The real tension is, it’s not autonomy versus non-maleficence, it’s grief, anger, fear versus physicians’ moral distress about what their expectations are and their own unease with looking into the future and seeing a horrible death for this person and not wanting to participate unwillingly.
Jafar: Emotions aren’t always addressed in ethical analysis, but ultimately, this is the stuff we need to grapple with if we’re going to communicate effectively with patients and caregivers about our concerns.
Gabe Bosslet: You know, it is helpful to talk about, you know, beneficence, nonmaleficence, autonomy, justice within the framework of this, but when you’re there and you’re at the bedside, that is not what’s going on, it’s fear, anger, guilt, sadness, and, and really your focus should be there and understanding that, you know, this person who’s asking me to do this thing that, that seems unreasonable is doing so because they’re speaking with their amygdala and not their cortex and understanding that the language that I use needs to be language that comes from my amygdala and speaks to their amygdala. That’s why I don’t use words like “The creatinine today is 3, it was 1.6 yesterday. And the potassium 7.2, and they have peak T waves. And now I’m worried that they’re gonna have a lethal arrhythmia,” that is cortex language that is not helpful. The language that is helpful is what I call meaning channel language. And if you ever take VitalTalk, or really good communication skills course, they’ll give you this language. And, you know, for that patient who had his renal failure in the potassium 7.2 and is needs renal replacement therapy and is on the, the door to, uh, lethal arrhythmia, the language there.
“I’m so sorry that, that your mom is so sick. I’m worried she’s gonna die soon. And we need to talk about that,” That’s a meaning channel conversation. I’m speaking to what matters to you and the things that you need to know to sort of make the decisions. I can give you the creatine today in yesterday, but it’s really not that germane for the conversation for 99% of people who you have these conversations with. So, the four sort of principles of bioethics will come up on a board exam and you’ll have to name them but much like the Kreb’s cycle – and my, my genetics and metabolism folks will yell at me for saying this – but that’s probably the last you’re gonna really think about them when you’re in the throes of an intensive care unit.
IV. Recommendations from ATS guidelines
Margot: To see how the ethics and emotions apply in practice, let’s dive into the ATS guidelines. We’ll talk about the 3 recommendations that come up most frequently in a clinical setting: the role of communication, requests for medically futile care, and requests for potentially inappropriate treatments. First, there’s a good reason we keep talking about communication strategies; they’re one of the best tools we have for preventing and mitigating conflicts.
Gabe Bosslet: If you read this the position paper recommendation, one is about communication. And, and we put that as recommendation one very specifically, because we think that this is the, the most important aspect of all of this. This is the cause of, and solution to almost all of these, uh, disputed treatment requests. So, you know, learning, you know, humble, empathic language, you know, how to be quiet, how to not use the word “but”, like all of those things that if you take in any communication skills course is like, and, and you can use at home with your spouse and your teenage sons who didn’t take out the trash like that is by far the more important sort of, you know, thing thing to do here.
Margot: Let’s turn to a second recommendation in the guidelines: what should we do if the patient or family requests a truly futile intervention? The ATS advises that we should not be providing interventions that are physiologically futile – this is the time to sit down, understand where the request is coming from, and explain empathetically why we won’t be providing the treatment. If there’s ongoing conflict, it’s worth consulting a service that can help mediate a solution, like ethics or palliative care. But when we brought this up with Dr. Bosslet, his personal opinion was that there’s sometimes room for flexibility. He described how even a physiologically futile intervention may have non-medical effects worth considering.
Gabe Bosslet: I’m not necessarily opposed to benign futile interventions. If it’s going to have some sort of a therapeutic effect for either the patient or their family member, now if you ask me for something, something that wasn’t gonna hurt someone that was expensive, I wouldn’t give it something that was gonna hurt someone that was cheap or had a chance of hurting someone that was cheap, or, you know, a reasonable chance hurting someone that was cheap, I wouldn’t give that right. if it’s gonna keep the therapeutic Alliance and sort of even maybe strengthen it, I’ll go there. I’ll argue for a long time with them before I give it. I’ll be honest with you. But if it’s gonna make you feel as though you’re doing everything you can for your loved one, it’s FDA approved for something, and I can use it off label. That sounds fine.
Margot: This is an opinion shaped by his experience as an ICU doctor, but he described how these requests are different, and easier to decline, in an outpatient setting.
Gabe Bosslet: Here’s a major difference, um, between requests in the ICU and requests at your PCPs office is that you have access to a medical marketplace. If you’re at your PCPs office. Meaning if someone goes to Margot and says, I want ivermectin and Margot says, absolutely not. They can get up outta their chair, walk out and be like, okay, thank you very much. And walk down to the urgent care and ask that doctor. And they can kind of shop this idea around to the marketplace. When you’re in the intensive care unit, you are at the mercy of whoever happens to be on service and on the name on the door, the physician attending physician on the door when you walk into that intensive care unit. You do not have access to a medical marketplace. So there is, I do think that there’s a significant difference there. So we really need to be careful about our assumptions and values when we decide to offer or not offer things in the intensive care unit, more so than in an outpatient setting, in my opinion.
Tamar: Ok, so let’s turn to requests for potentially inappropriate treatment. We framed our discussion with Dr. Bosslet around a hypothetical case of a woman with a history of decompensated cirrhosis, hospitalized with hepatorenal syndrome and deemed not to be a transplant candidate. Without a potential liver transplant, the clinical team considers whether dialysis is a “bridge to nowhere,” but the family insists it’s what they want for the patient. So firstly, what would we call this request?
Gabe Bosslet: I would definitely categorize this as potentially inappropriate. When you talk about, um, assessing whether something’s futile or potentially inappropriate, you have a treatment and you have a goal, right? So the treatment here is dialysis. And the question that you have to have is what is the goal, right? Because it’s possible that that would meet the, the definition of futility actually, depending on what their goal is, if their goal is that they want their loved one, you know, to pitch in a major league baseball game, I can relatively, you know, but they’re never gonna get a transplant. And their MELD score is 40. I’m comfortable saying that that’s a futile request. That will not achieve the goal to which you are, you are, uh, dedicated. But if your goal is to see your daughter get married in three weeks, oh, I can do that, probably. Right? I mean, I, I can’t guarantee it. There’s a whole bunch of things that could go wrong between now and then, but dialysis is definitively something that I would offer you to get you to that point. And so, you know, that’s why it’s really important that you understand – What is it that you’re hoping to accomplish and achieve with this? Because if you tell me, you wanna see your, your grandson’s high school graduation in, in a week and a half, then you know what, not only can you do dialysis, you probably should.
Tamar: That’s important: considering a potential treatment medically inappropriate or something that actually should maybe be on the table really hinges on the goal the patient is striving for. But while definitions are helpful, they’re only the beginning.
Gabe Bosslet: At the time at which it’s defined a potentially inappropriate therapy, that’s the time at which the heavy lifting begins. And you have to have difficult conversations about what that means and how you’re gonna move forward.
Tamar: The first step is pretty straightforward and intuitive, but it’s worth mentioning explicitly: we have to listen.
Gabe Bosslet: The difficulty is that this isn’t a language issue in my opinion, it’s actually an, an UN-language issue, right? So this is not a telling issue. It’s a listening issue. Um, you know, so, so I tell the housestaff all the time, like if you’re gonna go in and have a difficult conversation with a patient or their family member, that’s gonna talk about life, life prolonging issues, you need to do two things: The first is you need to find a chair and sit down, right? Preferably so that your eyes are below the level of their eyes, so that you take a humble position, literally with the level of your eyes in the room at the time. And the second thing is you need to know like five or six big things about that person’s life before you do this.
Tamar: And a big part of listening is trying our best to understand the patient as a person – getting to know the family, learning about the patient’s values and goals. This opens the door to being able to share information in a meaningful way.
Gabe Bosslet: Being that curious about patients is how you form a therapeutic alliance. Because once you’ve done that, you don’t have to do a lot of telling, right? Once you’ve done that, and you’ve formed a connection with that patient or that family member, they’re far more willing to listen to you when you talk about me, what I call, meaning channel stuff, right? You know, your husband, your wife, your grandmother is dying and we need to talk about that, then if you don’t know that stuff. So, so, so good communication. It’s not an, it’s an, it’s an, it’s an afferent skill. It’s not an efferent skill. Does that make sense? Um, whereas everyone wants the efferent skills. What words do I use? And it just doesn’t work that way.
Tamar: With that therapeutic alliance in place, we can work together, and there will be some give-and-take.
Gabe Bosslet: It is a negotiation. And if, if, if I’m asking them to give, I need to be willing to give as well, right. To, to sort of come so that we can come together on which way forward. So that means that I need to be willing to do things like time limited trials, um, and small proposals toward where I want to go. Okay. You know, you don’t want to move toward comfort measures today. You know, why don’t we talk a little bit about code status and CPR, let me do a tiny proposal in the direction that I think we ought to be going. It it’s a negotiation, frankly. And, and I, I, I think that seeing it that way is not a flawed way of seeing it at all. I think it’s more just meeting them where they are and walking with them through their grief in the process. And part of that is allowing them a little bit of control about how things go.
Tamar: It’s also crucial to acknowledge that much of this discussion is mediated through surrogate decision-makers, who have their own hopes and values, and who are dealing with their own difficult emotions.
Gabe Bosslet: I think that, especially when people get into an extremis, right, when they’re near death, negotiation processes have a lot more to do with perceptions of the surrogates than with the wishes of the patient themself. We like to sort of use language like, oh, if, if he or she were here, what would they say? And we do that a lot, fine, but you’re still negotiating with the surrogate at that point. Um, you’re negotiating with the surrogate’s view, you’re, they’re filtered view of what that person would say. And it’s filtered through that person’s amygdala, which means all the emotions that they have about this are all in this giant stew of thoughts about it, and it’s inescapable.
Tamar: And we all know these conversations are often really not easy, and disagreements do come up. If discussions between the family and clinicians are at an impasse, the guidelines have recommendations for a conflict resolution process.
Gabe Bosslet: So this is another area where the distinction between potentially inappropriate and futile is important because requests that are futile that cannot achieve their intended goals are really a medical judgment. It lies fully within the realm of just medical decision making that will not work period, full stop. Um, but things that even have a vanishingly small possibility of working become ethically complex because they include not only the medical issues, but our values and notions of what consists of the good, right? What is the good? What you have then is you have my notion of the good pitted against someone else’s notion of the good, right, that, that person who’s saying, you need to provide this and me, who’s saying, um, I don’t want, I don’t think that we should provide this. And so we need a bunch of other goods, people who have notions of the good to come in and help arbitrate that. Um, and so the process is really, um, a second medical opinion, right? Not an ethical opinion, just a medical opinion as my medical opinion of this case okay. Then you let, then you need to let the family know, right? So, um, you, you need to tell the family – Hey, we don’t think this should be, um, carried out. And we are going to, um, start down this process of a conflict resolution procedure, and we should be really formal about letting them know that. It shouldn’t be, there shouldn’t be any question in their mind about the fact that it’s going on or the steps that are about to be undertaken. And then it should be reviewed really by an interdisciplinary committee that’s tasked looking at sort of the ethical, um, issues around that. that committee should meet and make a determination if they determine that the determine that it shouldn’t be provided then the family should be given a chance to transfer the patient, right? Should be helped through the process of initiating a transfer, to find if there are other places that will take the patient and provide whatever it is they want. And, and lastly, um, if they can’t find one, then the family, and this is a bit controversial, but should be notified that if they so desire, they should seek extramural review, meaning they should go to court to see if the court thinks that we should actually be providing this. And then if all those steps are gone through and they’re, and they’re carried out, you know, that due process has gone through then, and only then should, um, the, the procedure be withdrawn or not provided.
Tamar: So this is good for when there’s time. But sometimes we run into life-or-death situations in a time-pressured setting.
Gabe Bosslet: So the scenario of, um, someone with advanced dementia comes in, let’s say that they’re on that they have severe septic shock. They’re clearly emaciated, advanced cancer, quickly, uh, ramp up to three pressers with, with blood pressures in the fifties, on the vent, in the intensive or in, in the emergency department, clearly this person is dying actively. You approach the family and say, you know, Mrs, or Mr, or Mrs. So-and-so, your loved one is, is so ill. You’ve done. You’ve done all that. You’ve sat down, you’ve harvested, you’ve gotten their life narrative, you’ve done your best. And you say, you know, with everything that’s going on, I really think that it’s possible that their heart stops in the next few hours. And, and I’m gonna let you know that we’re not gonna, we’re not gonna do CPR because, uh, I don’t think it’s going to be gonna be helpful at all for your loved one. And, and, and I’m sorry to tell you that, which is the way that I generally do this. I don’t offer it in these scenarios. I let them know it’s an informed ascent model rather than informed consent, but let’s say that they, uh, say, oh, whoa, wait a minute, doctor, hold on. What do you mean? You’re not gonna do CPR. Yes, you are gonna do CPR. We know the way this works. We have to have consent to you not doing CPR. And, uh, we think that you should do CPR. This is a scenario where this fits under what’s called the time-pressured, potentially inappropriate treatments, so let’s say that you’re in there, pressure drops and they lose a pulse. Are you then obligated within the confines of this statement to provide CPR? And the answer would technically be, no, you should get every clinician in the room together, preferably before they become pulseless and say, listen, this patient’s really sick. We don’t have enough time to go through a full thing. If they code in the next couple hours, are you guys opposed to us not performing CPR in this scenario? And the guidelines would say that if everyone there is in agreement, or let’s say they’re, they’re clearly their blood pressure in the fifties, blood pressure in the thirties, and you look across the bed and there’s a fellow there, another attending physician, the ICU physician’s there are you guys okay with us not doing anything the family’s behind you saying, do everything. Um, that would satisfy the criteria of the paper saying that you should do your darndest to get everyone around, as involved as humanly possible. But if you’re convinced that what they’re asking for is absolutely inappropriate you can go ahead and proceed with not performing that. Now a lot of people would say, well, look, I can provide a round or two of CPR. I don’t know. I would be, I that’s, it is what it is. Everyone has different comfort levels with saying “no” to folks. I would be comfortable being like, yeah, we’re, you know, I’m not comfortable providing that. Your loved one is so sick. They’re likelihood of, of survival of this code is so low that I’m not gonna provide that. I would wanna write it in the chart and preferably have a couple of my colleagues sign it as well.
Tamar: And while it’s extremely helpful to hear Dr. Bosslet talk through his process of proceeding in these situations, he still emphasized the importance of checking your local hospital policy, as well as relevant laws. Guidelines offer crucial support, but legal directives take precedent.
Gabe Bosslet: But if your local hospital has a written policy, you need to follow whatever that written policy is. So if your policy doesn’t have something like that, you probably shouldn’t follow the ATS guidance because you need to be following your own policies. There are states like Maryland that have a medically ineffective statute on, on the record that allows you to say, to, to say no, like it’s written in their state statutes, that, that you don’t have to provide CPR and scenarios in which it’s not going to be beneficial. Um, so there are you, you, you just have to know your local, both your, you know, super micro, um, policies, but, and also your state policies, depending on where you live in practice.
Tamar: In reality, many of these situations are really complicated and tough – since there’s often prognostic uncertainty and other nuanced factors, many reasonable clinicians would provide CPR under these circumstances.
Gabe Bosslet: Let’s get down to brass tax. If there’s, if there’s gnashing of teeth and renting of clothes over the bed, I’m going to just do it because it’s the, I think the moral injury that I’m causing to not, I think is too much. Um, but if I turn around to the family and say, you know what, you guys, I’m so sorry, they’re, they’re dying. And, and nothing we do here is gonna help. Um, 9 times outta 10, they just kind of bow their head and start crying or, it’s, it’s generally not, there’s usually not a screaming match about, about doing it. Art of that is, again, goes back to the afferent part of the conversation where I, I’m only comfortable doing that as an, as an individual clinic attending clinician when, when I’ve listened to the family.
Good bit. I’ll tell, I’ll be honest with you. I’m much more inclined just to walk into the CPR. If I don’t know who these people are, and I’ve never met them in my entire life, because I don’t have that therapeutic alliance with them to sort of have any gravitas, to look them in the eye and say, you know, we’re not going to do this. I’m just another, you know, individual off the street. And so a lot of it depend, you know, and that’s why, that’s why, if I’m the attending position on service. And I have someone who’s on three pressers and kind of going down the tubes and it’s 6:30 at night and I’m leaving, it’s incumbent upon me to go have that conversation before I leave, because whoever the poor person is that’s on overnight, you know, hasn’t done the heavy lifting of harvesting the fam the, the life narrative likely that I have, maybe they will, but, but that’s a, he, that’s a lot to ask of a night person who’s there to kind of put out fires. And so it’s on me or who, maybe it’s not me. Maybe it’s one of the house staff who’s actually sat with them for the longest to sort of do that work before we leave for the night, because expecting someone else to do it is a fool’s errand. So it, it does depend very much on the context. I’ve used the word, you know, soft and mushy a lot. You know, there, there are no hard and fast rules. You you’ve, you know, you, you just have to do what, what works best for the, the, the, the situation.
Margot: I wanted to wrap up with a few closing words. Cases of potentially inappropriate care are some of the most morally distressing situations I’ve run into. There have been many times where I’ve been in codes that just felt wrong, where I’ve felt pressured to provide an intervention that felt pointless, where I’ve felt complicit in the suffering of a patient who I thought was dying. That moral distress is real, and it takes a toll, and our intuitions are worth listening to even when we put them aside. But we hope we’ve convinced you that we shouldn’t label a patient’s situation futile simply because an intervention would lead to a quality of life that we wouldn’t want for ourselves. It’s not our life to live, so it’s not our call to make. Determining whether an intervention is futile, potentially inappropriate, or medically reasonable depends just as much on the patient’s goals and values as it does on our medical assessment of the situation. Finding a resolution to these challenging cases takes hard conversations, and an honest realization of the emotions this brings out in all of us.
Gabe Bosslet: One helpful thing and sort of a, a mindfulness move, uh, in these is to name for everyone around how hard it is for everyone and yourself, the family, like everyone’s struggling emotionally with this case and the fact that we’re gonna continue to muddle through it together and do our best. And so I think just naming the difficult emotions that we have when tackling these as clinicians and as, as fellow humans, I think is, is probably as, as helpful as anything else
Jafar: Thanks for tuning in! We know these topics can stir up more questions than answers, and we look forward to hearing more about your experiences delivering potentially inappropriate care. Please continue the conversation with us online at our facebook page, on twitter, or email us directly. Find show notes and contact information for us on our website: coreimpodcast.com
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Finally, special thanks to all our collaborators on this episode, our wonderful audio editor Daksh Bhatia, music editor Solon Kelleher, our illustrator Michael Shen, moral and executive support from Shreya Trivedi, and most importantly thanks to you, our listeners!
- Bosslet, G. T., Pope, T. M., Rubenfeld, G. D., Lo, B., Truog, R. D., Rushton, C. H., … & White, D. B. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318-1330.
- Helft, P. R., Siegler, M., & Lantos, J. (2000). The rise and fall of the futility movement. New England Journal of Medicine, 343(4), 293-296.
- Sibbald, R., Downar, J., & Hawryluck, L. (2007). Perceptions of “futile care” among caregivers in intensive care units. Cmaj, 177(10), 1201-1208.
- Jox, R. J., Schaider, A., Marckmann, G., & Borasio, G. D. (2012). Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians. Journal of medical ethics, 38(9), 540-545.
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Tags: autonomy, care, communication, ethics, justice, moral distress, non-maleficence, treatment