TIRBO #43: Lying to ourselves (the clinician’s perspective on end-of-life care)

Hey everyone, I'm Brandon Odo. And I'm Brian Bowling. And this is Critical Care Scenarios, the podcast where we use clinical cases, narrative storytelling and expert guests to impact how critical care is practiced in the real world. Hey guys, it's Brandon with another Turbo. I want to do something a little different for the episode today. What I'm going to do is just read to you from a post that I made on the blog sometime back that's a critical concepts, critcon.org. This might strike you as a little lazy, but I have paraphrased or been inspired by stuff I've written previously. So I figured I'd just try actually reading it to you. I've already put the thought into it. So I mean, let me know if this works for you. It's going to be a little more formal than other formats. But this topic is what I titled, lying to ourselves, the clinician's perspective on end of life care. The situation. In medicine generally, but critical care especially, we often care for patients at the end of their lives. Sometimes we succeed at prolonging their life and that pleases us because we like to fancy ourselves healers. At other times, we are unable to significantly bend the arc of mortality, such as when a chronic terminal illness approaches its final stages or when catastrophic acute disease overwhelms our ability to manage it. At such times, after recognizing the poor odds, we may believe it's best to stop fighting a losing battle, although many patients and their decision-makers will assume by default that we will and should keep attacking the disease in an effort to cure it. As clinicians, we often suspect this will be futile. We pluck our tongues at each other and say things like, this is not going to end well. Why are they still doing this? And is this really what they want? Eventually, we take the family aside for a, quote, family meeting to discuss, quote, goals of care. This is a euphemism for a quiet, earnest conversation in which we will try to convince them to set limits on our curative efforts and transition towards more comfort-focused care. A new approach, which will be unlikely to a prolonged life and may even shorten it. We frame this as a decision to be made solely by the patient or their decision-makers and it generally is, at least in the United States. In other settings or other countries, however, the decision may be made for them with the rationale that ICU beds are not infinite and cannot always be exhausted on patients with the poor prognosis. We try to avoid paternalism by dictating the, quote, right answer. Instead, we ask what the patient would want, based on their personal values irrespective of our own. However, we do have our own beliefs, and as a rule, we believe that in such desperate situations, aggressive, curative care is bad, and palliative care is good. This universal truism is accepted by most clinicians, woven into the culture of our teams and transmitted to trainees as part of their invisible curriculum. Poles of physicians, for instance, describe an overwhelming majority who would personally wish to be made do not resuscitate, in contrast to the bulk of their patients who are generally being resuscitated. There is a perception that as medical providers mature, particularly in high-acuity, resuscitated fields like critical care, they transition from a love of saving lives toward a more sagacious attitude that accepts the things they cannot change. For many, successfully making a more abundant patient, quote, comfort measures only, is nearly as satisfying as the rare save, who, with our help, manages to cheat death and return to their former productive lives. Indeed, an excessive focus on life savings considers somewhat childish, if not actually harmful, since it creates cognitive dissonance and moral injury when contrasted against the large number of patients whose lives cannot be saved. This has been true since the burned-out interns in the House of God struggle to find meaning in their wheel-spinning care of more-bun gomers. Do patients define their own goals of care? In short, yes, but we wish they didn't. We ask what they want done, but it isn't a true open-ended inquiry. It's a test, with a right answer in a wrong one. Like the attending who asks an intern to describe the Krebs cycle or an interrogator who demands to know if a suspect is guilty. Often, we won't even ask the question, if we assume we should pursue aggressive care, when admitting the healthy 30-year-old with appendicitis, how many of us confirm whether they would want to receive CPR. Like a poorly-applied diagnostic tool, the question seems to fall below a certain test threshold. We're so convinced we already know the truth, that an answer would either be redundant or erroneous. Only rarely will a patient or family member favor less aggressive care than we deem appropriate when it does happen we're thrown for a loop and may try to change their minds. But there's still hope, we cry. Thus, full-bore disease-limiting care often occurs because of patient wishes, but despite our own. We pay grudging lip service to patient autonomy, but maintain our own beliefs about what's right. Who wouldn't? And behind the closed doors of our team rooms or our own minds, we suspect such choices are simply wrong. People might reasonably disagree in preferring chocolate over vanilla, or their favorite genre of music, but we think could only want everything done in such a way. Such dire circumstances due to ignorance, not understanding the prognosis, or denial, understanding it, but not accepting it. This perspective would make sense if prognosis were a sure thing in every case. If it were 100% clear that the patient will not survive their acute illness with an acceptable quality of life, then there would be no rational reason to continue treatment. But even the most arrogant among us would never predict an outcome with 100% certainty. We merely play odds, and from the wrong side of those numbers, a 10% chance or a 1% chance or a 0.1% chance might sound pretty good when the alternative is 0%. So why do we tend to feel that rolling those dice is the wrong decision? Maybe because the harms of aggressive, curative care often seem to outweigh the potential benefits. Wing the harm versus benefit of a decision is a vital part of exercising medical judgment, but crucial to that process is acknowledging to whom those benefits and harms accrue because it changes the calculus. Quibono In a classic example, we might tell a patient that in the event of their cardiac arrest, we find it unlikely that CPR will be successful at restoring circulation. So what is an acceptable outcome after critical illness? It's one thing to survive, but another to return to a good life. In many cases, we feel confident in predicting a poor prognosis, less because we're certain about the time remaining and more because of the projected quality of that time. We reason that the patient with end-stage dementia might survive this bout of pneumonia, but even in the best case, we'll merely return to their previous state of being bedbound and nonverbal, and that's no way to live. The patient with multi-organ dysfunction might make it out of the ICU, but only with a trache and a peg, and we'll be spending the rest of their life at a nursing facility. That's no way to live. The young man who suffered a catastrophic intracranial hemorrhage with herniation might survive hospitalization, but will never again enjoy his hobbies, pursue his career, or do the things that make life meaningful to him, and that's no way to live. It's usually easier to describe outcomes qualitatively than quantitatively. For instance, we might not know the odds of a patient walking again, but we know that they're being discharged to a nursing home and won't be breathing off the ventilator any time soon. In short, prognostication enhance the decision-making seems simplest when the projected quality of life appears poor, but what is quality of life? To limit life prolonging care based on a patient's projected quality of life requires the accuracy of several nested predictions. After stabilization of their acute illness, they will retain a degree of physical, cognitive, or emotional disability. Then quality of life, their disability will result in a quality of life they find unacceptable. And then the determination that with such a quality of life, their life would not be worth living. And then finally, an additional layer of subjectivity that our assessment of the above will match the patients. Each of those predictions will need to hold up to allow prognostication that leads us to appropriately limit life prolonging care. That's a narrow needle to thread. First, their function might end up better than we expected, and our ability to predict function is inconsistent at best. Next, although their function is poor, their impression of it might be sanguine. Not all disability is a disaster. Indeed, psychological and economic studies of happiness have repeatedly found evidence for a strong, although not completely, immutable, hedonistic set point. Even after great setbacks in life, including new disability, most people's overall happiness eventually tends to regress back toward their baseline. This appears to hold true in our patients as well. Dezky at all found six months after critical illness, patients were just as likely to report their quality of life as being better, worse, or the same as before their illness. How could it be better? Well, some patients may find it is given their lives, new meaning or perspective. Others are surprised at how well they could tolerate the new changes. We might be unable to imagine how we'd live a satisfying life with a tracheostomy, for instance, but that's no proof that we couldn't, and even the avid tennis player who will never run again might find new pleasure in playing music. Of particular note, patients who were able to self-report quality of life consistently graded it better than when surrogates reported it on their behalf. And across the board, clinicians were inaccurately pessimistic at the time of admission in predicting eventual quality of life. Patients are just more resilient than we think. Now mitigating this somewhat, Dezky did find that better functional outcomes, particularly a normal neurological status and the ability to return to one's previous residence and past times, was associated with a better quality of life. Happiness is not completely independent of function. It's just not as dependent on it as we might think. Finally, even if someone's quality of life is greatly degraded, they might still find their life preferable to death. After all, most living people do, even unhappy ones. What makes a life worth living? Compared to the other layers which are at least somewhat quantifiable, this final question is entirely subjective. Indeed, it lies more in the realm of philosophy than of medicine because it does not require illness to be relevant when does a patient consider their life preferable to death after critical illness? Never mind that. When does any person consider their life preferable to death? Kamu famously described the problem of suicide, writing, deciding whether or not life is worth living is to answer the fundamental question in philosophy. All other questions follow from that. Life is a random, perhaps even absurd series of events without a structuring perspective, which is religion, which we generally try to separate from modern medicine. There is little intrinsic reason why anybody should prefer to be living instead of not. Yet we generally do. There is undoubtedly a biological impetus here, a living organism without a natural urge to survive would be evolutionarily disadvantaged. But never mind that. There are biological underpinnings to most of our choices, but that doesn't remove their meaning. Meaning doesn't arise from biology, but from our perception of it. We each define our life by the stories we tell, the structures of significance we create, the labels we assign, and the places and people and things we choose to hold dear. None of it is written in stone, the molecules around us don't care. None of it is objectively right or wrong. There are merely decisions, determinations about the type of reality we prefer to inhabit. Many of us choose to value human life very highly, especially our own. That unique, impossibly complex network of neurons and the magical supervenience of consciousnesses, perhaps the most beautiful thing in the universe, from our perspective. Or mine anyway. But that's the point. Throughout our lives, each of us has the highly personal task of deciding what's important to us. Nobody can decide it for us. Nobody can tell us whether our life is better than our death. Critical illness changes the balance, giving us additional burdens, but still the calculation can only be performed by the patient, and perhaps not even by them. As Otermatin Stutzer found, even our own predictions of well-being after life altering events are often inaccurate. The only way to know how we'll tolerate disability is to try. I don't know whether your life is worth living. You can't tell me, and neither of us can tell the patient who is radically disabled after a severe stroke. His life is now radically altered, but is his new reality worth perpetuating? Who can say? So where do we go from here? We've shown now that what we previously considered straightforward, the goals of care discussion to determine the patient's wishes, is, in fact, an attempt to answer an eye-on-answerable question, one, stymied by difficulties in prognostication, psychological smoke screens and philosophical dead ends, and yet nearly every day on the ICU, we're faced with addressing it, and avoiding it is no solution simply an answer by default. So where do we go from here? There's no clear solution, but we might do a little better if we remember a few guiding lights. First be humble. For all our training, we're no closer to being expert on these issues than a layperson. At most we can provide some cautious guidance. Inevitably though, there comes a point where the facts end and subjectivity begins, if you think the answers are clear, you're misunderstanding the questions. Second be kind. As hard as it is for us, it's even harder from the other side. Wanting to live, even when the odds are against it, is not stupid. Wanting the same for our loved ones is not cruel. When it's your turn in the crucible, you might just want it too. Ignolage your biases. By recognizing and accepting our own perspective at the table, we can take steps to minimize its impact. When we begin to engage a family in an effort to get the DNR, we can pause. Knowledge to ourselves that we prefer to provide certain types of care over others, but assert that our preferences have no bearing on what goals are best for the patient. Don't oversimplify. Life-prolonging care, even low yield, desperate attempts at it, is not evil, and palliative end-of-life care is not noble. Each is just a tool, with a correct time and place to be wielded. The application of either one should inspire in us neither pleasure or shame, only a small whisper of doubt as to whether we chose correctly. Finally, be cautious. Hand in hand with the idea of humility is the precautionary principle. When in doubt, it may be wise or in sounder to err on the side of caution, and that may mean prolonging life. When faced with this impossibly difficult question, often nobody will know the answer not even the patient, but prolonging life at least temporarily, and it's always temporary. Offer is more time for clarity to emerge, and in the long run, more opportunities to adapt and discover happiness. As John Stuart Mills likes to say, more opportunities for experiments in living. At the peak of acuity during an ICU admission is the most difficult time to decide whether to live or die, yet that's often when we ask. People care that brings about comfort is just as important as that which seeks to prolong life. Yet when it's unclear which is most appropriate, it takes greater hubris, with greater potential for error, to recommend accepting death than to postpone it. My final thoughts. These are difficult troubling questions, difficult because we often lack the answer, but also because there may be no answer. Meaning because they reach beyond medicine to the heart of what life is really about. There is no way to simplify the equation, and maybe that's the real lesson here. We need to stop believing we have the right answer, and stop judging patients and their advocates who fail to get it. Instead we should sit with them, offer whatever facts and guidance we can, and struggle alongside them to reach an outcome as good as we can endeavor to make it. That may or may not be enough, but that's all we've got. You guys can see the post on the website with links to the references, if you'd like. I'll talk to you next time.