Okay. We're going to talk about some ethical challenges describing indications for and expected outcomes of a clinical ethics consultation, talking about the principle of double effect and define some terms, a number of different terms. Okay. So I'm going to start with a little story to get you kind of feeling this. Standard case, Mark, he's 82 years old. He's in previously good health. He presents with fever, dyspnea, respiratory distress, and is found to have COVID-19 pneumonia or the flu or strep or whatever else. He's initially awake. He's alert. He's conversant. Suddenly his respiratory status gets worse. He's intubated. Now it's complicated biceps, anasarca, poor nutrition. Now it's a whole month later. We placed a trach. Two months later, he's still hanging out in the ICU, too unstable for transfer to the LTAC. The patient's wishes are unknown because he never talked to anybody about it. And he's too encephalopathic to communicate. The family wishes are to continue aggressive management so we can get him back to his pre-COVID condition. But the bedside clinicians, your nurses, your respiratory therapists, your physical therapists, they're all coming to you and they're like, we're worried that we are unethically prolonging this man's suffering. Ever happened? Okay. Now we've got a different case, 86 year old lady. She's got metastatic cancer. She's admitted with nausea and vomiting. They find a small bowel obstruction and a venting G-tube is placed. There's no more chemotherapy because of her declining clinical condition and poor nutrition. So oncology signs off. She's got severe pain, frequent parenteral opioids. She's uptunded. There's a suspicion for hypercapnia. She's on the floor. There's a rapid response called. Her ABG confirms acute hypercapnic respiratory failure. Now the patient told somebody last week that she's ready to die and she would like to go in peace. That was last week, not today. Today, the family's at the bedside and they want everything done. They want her intubated. They want her to be full code. Have any of these ever happened to anyone? Okay. So just, we're going to talk about some of these, the indications for ethics consultation and some of the words and terms that we use as we approach these issues. We all know how we feel when these situations come up. Okay. So have you ever called an ethics consultation? Has anyone ever called an ethics consult on you? How did that make you feel? When are ethics consultations recommended in the new-ish family-centered care guidelines? And can ethics committees be used to explore organizational versus clinical ethics? So some deep questions here. In terms of the guidelines, these were published in 2017. So that's why I said new-ish. So the recommendation is that we suggest that ethics consultation be provided to decrease ICU and hospital length of stay among critically ill patients for whom there's a value-related conflict between clinicians and family. It's tough to research this stuff. So further research is needed to better understand the effective and cost-effective components of ethics consultations and to identify the patients for whom ethics consultation is most beneficial. Vague enough? All right. So how, who, when, what's the process, what kinds of outcomes do you expect, what family-centered care strategies, what evidence-based information is there to prevent the need for ethics consultations? Because it always gets a little dramatic when ethics gets involved. I pulled some information from my own institution, so this is probably not testable, but in our institution, an ethics consultation can be requested by a patient, a family, or any member of the patient's healthcare team, including physicians, nurses, or social workers. The goal is to offer further understanding of the complex choices to be made and to help those involved agree about treatment goals and plans of action. Call the ethics service for the following, concerns about a diagnostic procedure, treatment, or discharge, goals of treatment, clarification about difficult decisions or choices involved in care, making questions regarding advanced directives or surrogate decision-making. So anybody can call an ethics consult, and it's not necessarily for or against the family or the clinician or the physician, though sometimes it feels like that. It can be called by anybody as opposed to a clinical consult, and I think that's kind of a universal concept to remember. Okay, and then in terms of how to organize an ethical review, four topics that the ethicist needs to kind of think about. What are the medical indications going on here? What are the patient preferences? Family, you know, this is the substituted judgment, surrogate decision-making issue. What are the quality of life features present? So how are those relevant or not? What are the contextual features? And then we have to consider our core ethical principles, which I don't think I'm going into all of those, the four pillars, the beneficence, non-maleficence. No, there's two more, and I'm blanking on them right now, so I apologize, but justice and fairness. No, justice I think is fairness. Beneficence, non-maleficence, justice, and autonomy. Yes, thank you. Okay, sorry, don't go off script. And then listing the ethical options. Okay, and then we talk about what is best for whom? Best for the individual, the greatest good for the group, the hospital, the institution, or best for society? For whom is the best interest in favor of? So we're going to talk about the weights and the balances in terms of making decisions for those who can't decide for themselves. We're weighing best interest for the patient, institution, and society all at the same time, and then substituted judgment, which is really important. This is what the patient would have wanted. Okay, to whom do you listen? The patient or the family. This is the lady who, she said she didn't want to be intubated, but she didn't sign any paperwork saying that, and now she doesn't have a mental status and her family gets to decide. So in the Patient Self-Determination Act of 1990, the law states that the advance directive specified by the patient supersede the wishes of other parties involved. And I'll use the word advance directive. This is in advance of now. That's why it's advance, not advanced with a D. Surrogate decision making is required if no advance directive is available. Surrogates should exercise substituted judgment and not their own preference. So those are the concepts. Substituted judgment is, as we mentioned before, what would the patient have wanted done or not done? And then best interest, the definition is what is in the perceived best interest of the patient. Okay. But the surrogate decision maker does get to decide. Even though they're supposed to do all these things legally, if the patient does not have the ability to make decisions, the surrogate takes over. So that's why it's recommended to have an advance directive, choose a power of attorney. You have to choose that yourself and sign that document, or the patient needs to. And at the time where the patient does not have decision making capacity, the surrogate decision maker does get to decide legally. All right. We've got another case. John, he's 84 years old. He's got coronary artery disease. He had a cabbage. He smoked, diabetes, CKD, some strokes. He is here in the emergency department today with new left arm weakness and slurred speech. He's got secretions. His blood pressure is elevated. He gets lethargic. He's intubated and he's transferred to the ICU. There's a whole bunch of new strokes. He's on tube feeds dialysis. Four days later, he's not on sedation. He's unarousable to loud voice, sternal rub. He does not open his eyes. Now, here's the amazing thing. He had talked with his kids and he didn't want to be kept alive on machines if he couldn't interact with his family members. Well, that has happened now. So the medical team has a family meeting and they recommend removing the ventilator and allowing him to pass naturally. However, the daughter is worried that she's euthanizing her father. So we'll go through some ethical principles and some more definitions. Ethical principles. And just let me put in a plug for this reference. It's a little old. It's from 2008. This is when I was in fellowship, but it is still the best, most thorough reference on end of life care in the ICU by Robert Truog, Meg Campbell, and Randy Curtis. I apologize for the misspelling of his name, but I highly recommend looking up this reference. Okay. So ethical principles. Number one, withholding and withdrawing life support are equivalent. Number two, there's an important distinction between killing and allowing to die. And number three, the doctrine of double effect. Okay. We're going to talk about each of these in detail. Withdrawal of life support. It's the most common way to die in the adult and pediatric ICU ranging between 60 and 90 percent. Withdrawal, withholding a little bit different psychologically, but conceptually. So withdrawal or withholding. The most common support that is withdrawn, taken away, is mechanical ventilation. Most people will receive some analgesia and sedation, yet clinicians are often uncertain of the boundary between palliative care and euthanasia. Not you, because you've learned and listened and read the literature. So it's really important to understand the doctrine of double effect. Withdrawing and withholding. There's a little bit of a psychological difference, right? It feels active for the clinician doing the withdrawal, for the physician writing the order, for the family making that choice. There's some moral responsibility, so it may feel different to all of the parties involved, as opposed to withholding, which is passive. Let's not do any more. But ethically, they are the same. Philosophically, legally, no distinction. Every treatment can be assessed based on benefits, burdens, and patient preference. We don't feel the same way if it's like an antibiotic. We'll start an antibiotic. It's not working. It's not indicated. We stop the antibiotic. It feels a little different when it's mechanical ventilation, but it's more or less the same. We've started it. We're treating it. We're treating the patient. We're keeping somebody alive, but we're not improving anything, so it's no longer indicated-ish. The value of every therapy may be unknown prior to the therapeutic trial. So maybe we're going to get them better with mechanical ventilation, so let's give it a try. In terms of language of removing the ventilator, a little evolution. So first, the terminal wean, that was an older phrase, and it means stepwise reduction of ventilatory support, leaving the artificial airway in place. Now, that's totally fine and good, except that when this phrase was first described in the 1990s, the definitions describe something that could vary, could last for several days, which to us would be oftentimes considered an unacceptable delay, and even for families today. So now when terminal weans are performed, they are generally performed over a couple of hours. Terminal extubation, that's rapid cessation of mechanical ventilation followed by removal of the artificial airway. So just take that thing out. We don't need to change anything with the vent. Is that okay? Is that not okay? Sometimes it's not okay. Sometimes you have to do a terminal wean, or we talked about the neuromuscular blockade, which we will talk about again in a few minutes. And then newer terms, phrases, compassionate extubation, palliative ventilator withdrawal, they emphasize the goal of alleviation of suffering. However, the compassionate extubation technically doesn't include removal of a tracheostomy, so palliative ventilator withdrawal may be a little bit more technically correct, but they all mean more or less the same thing. Okay. Allowing to die. So like I said before, patients and surrogates have the right to refuse any life-sustaining therapies. Removing and refusing are the same. Withdrawing and withholding are the same. And it allows the underlying illness to run its course. It allows natural death. It allows nature to run its course. People like that phrase when you say that. Okay. And then our daughter asked about euthanasia. So we'll talk a little bit about the definitions of aid in dying. Medical aid in dying, that's a phrase that's often used. They call it MAID, M-A-I-D. It's a medical practice that allows mentally capable, terminally ill adults to request a prescription for life-ending medication from their physician, which the person may self-administer if and when he or she chooses. After a full evaluation, the physician, in consult with the multidisciplinary outpatient team, may prescribe a lethal prescription. We don't do that here in Illinois. Some of you may come from some of the states where they do. Here is the list of them. There are currently 11 states in Illinois that allow this, but it's not something we would ever do in the ICU. Other terms include physician-assisted death, physician-hastened death. So they all have a little bit of value-laden phrases. The proponents of this concept do not like the phrase physician-assisted suicide because of its negative connotations. Death with dignity can refer to an end-of-life option, state legislation regarding such an option, or organizations that promote it. You see my reference here, deathwithdignity.org. That is an organization that promotes medical aid in dying. Euthanasia is completely different. It's where the physician or provider administers medications that hasten death intentionally. And ethically, that's not okay. That's why this daughter is worried about it. It's not medications that provide comfort, but medications that cause death. All right. We're going back to our case. We have decided to proceed with compassionate extubation. The patient started on a fentanyl drip. He's extubated. He's comfortable but unresponsive. Okay. So the daughter didn't want to euthanize, but the son here, he's like, oh, well, we're sitting here. We're bored. Nothing's happening. Can we make it go any faster? No is the answer. But that's probably not what he wants. He wants a little more explanation. What can we do now that we're sitting here watching him not suffer but not die? Okay. So the principle of double effect. This is the principle that gives us the ethical rationale for providing relief of pain or other symptoms with sedating medications when this may have the foreseen but unintended consequence of hastening death. Foreseen but unintended. That's not our goal. The distinction lies in your intent. Your goal is to alleviate pain, discomfort, and dyspnea. Therefore, you must give medications that treat these symptoms in doses that are appropriate to manage these symptoms for the patient. And this is a fear that clinicians often have and probably testable. Sedatives and analgesics don't actually hasten death. Now this is difficult to study, but there have been studies in terms of like what were the doses of opioids given? What were the doses of benzodiazepines given? And what was the time to death after that? And then there's some theory conjecture, but basically there's a number of papers that have come out that haven't been positive in either direction. A lot of people conjecture that you take away the physiologic drive to breathe, that metabolic demand, and it actually decreases the body's total consumption and therefore they may survive longer or not. So they do not actually hasten death. That's super important to know and to tell your families. So in concept, the doctrine of double effect, you've got an act which leads to a good effect and a bad effect. We're giving morphine here most of the time, right? Or fentanyl or hydromorphone. Conceptually, an opioid is an opioid is an opioid when it comes to end-of-life care and dyspnea. The good effect is to relieve pain. The bad effect is to speed death. Like I said, it doesn't happen, but maybe you feel like it does. Maybe the family's worried that it does. So the act is morally good or neutral. We're just giving a drug. It's a regular drug that we give all the time. It's an IV opioid. The good effect is what is intended. The bad effect is just foreseen. It might happen as a result of what we're trying to do for the good effect. The bad effect is not the means to the good effect, right? We're relieving pain with morphine. We're not speeding death with it. And the good must outweigh the bad. We're talking this balance again. Okay. So this is the concept of the doctrine of double effect. And in terms of philosophy into law, as I was preparing, I was reviewing this case. What was this case? This was a case of some patients or family members who wanted their family members to be allowed to have their death hastened by medications in the ICU. And Quill, this is Tim Quill, who's a renowned palliative care ethicist physician who has published a lot of the papers in the past two decades about palliative care, end-of-life care, ICU sedation. So this was what the justices described. It is widely recognized that the provision of pain medication is ethically and professionally acceptable, even when the treatment may hasten the patient's death if the medication is intended to alleviate pain and severe discomfort, not to cause death. This was in 1997. So it's been a while. And I think we all practice this regularly, but there have been many precedents in the law that give us this guidance. So in terms of what is or is not ethical or legal, no morphine, that's probably not particularly ethical if the patient has dyspnea or pain, because we have a legal and ethical obligation to treat pain and suffering at the end of life. How about some potassium? Maybe 100 milliequivalents, 200? No, probably not, because the bad effect, the potassium has no symptomatic benefit. It purely is to cause death, right? So that's not okay. A large bolus of morphine before extubation. Well, what's your definition of a large bolus? Two milligrams, four milligrams, 10 milligrams, 100 milligrams? That's where the difference is, right? What's an appropriate dose for the patient based on what they've been receiving, what they can tolerate, and what will cause an immediate respiratory depression? I once had a nurse push two milligrams of morphine, and then the patient died shortly after. She was really freaked out that she caused the patient's death. But the patient had been getting two milligrams of morphine for two days every two to four hours. No, that two milligrams morphine was fine. You did not cause it, right? If you push 200 milligrams, that would be a different story. So it's about the intent and the dose that's appropriate or inappropriate. It's not plausible that the intention of 200 milligrams of morphine was purely to relieve pain. Neuromuscular blockade before extubation. I once had a family say to me, we don't want to take off this neuromuscular blockade because they've been on it while they've been on the ventilator, and it makes them look so comfortable. Sure does. But they have no analgesic properties. And then titrated administration of morphine. So that's what we do. That's what's ethically, clinically appropriate because it shows the intention to relieve suffering. Obviously, document this in your notes. There must be documentation for relief of suffering. And there's no specific maximal dose. If my patient received 200 milligrams over the course of a day, that might be appropriate. It might not be appropriate depending on how they've been titrated, right? Somebody might be on four milligrams an hour escalated to seven milligrams an hour. That's no different than one to two milligrams of hydromorphone. And we've seen plenty of patients on those doses, but they get titrated up to there and we've monitored it. So it's an appropriate dose to make the patient comfortable. Okay. Paralytics or neuromuscular blockade. How many times have I said this already today? So sorry. Never give paralytics during the dying process to patients who are not already receiving them. Obvious, right? But we just have to restate the obvious. Ethically, it's just taking away the ability to show distress and also taking away the ability to take a breath. That's not ideal. When patients have been receiving paralytics, withdrawal of the life support should be delayed until the neuromuscular blockade has worn off or been reversed. So how long is that? Probably four half-lives, generally about an hour with a sesetracurium, which is the one that we... Sorry. Did I say 45 minutes to an hour for a sesetracurium for the fourth four half-lives? When waiting would require an unacceptable delay in withdrawal of life support, then withdrawal may proceed with careful attention to the patient's comfort. That's what it says in the literature. So just tread very carefully. Okay. So a few end-of-life pearls. Document, document, document. Verbalize, verbalize, verbalize. Counsel your families. This is our goal to relieve your suffering. Our goal is to provide comfort, not to hasten death. Demonstrate your intentions with your actions. Titrate. Don't order a large dose all at once. Anticipatory dosing is necessary and appropriate before a terminal extubation. How much are you going to give? Depending on whether they're naive or tolerant, something in that range. Be prepared with this request. Please, can't we just get this over with? We are making sure they're comfortable. Our goal is not to hasten death. We're allowing the illness to take its natural course. And document what you give. You should be proud of providing excellent end-of-life care. Okay. We're not done yet. Which of the following is true according to the principle of double effect? Total morphine is limited. No. We said there's no ceiling. Hydromorphone plus morphine produces a better effect than single drug therapy. No. An opioid is an opioid is an opioid. They all work the same. There is no dose limit to medications given to prevent suffering and not intended to cause death. That is the correct and true answers. Because sedatives may induce respiratory depression and prevent suffering, targets are included for each order. They may induce respiratory depression, but the targets are based on not dosing targets, but symptom targets. Okay. Question two, removing the endotracheal tube and stopping mechanical ventilation that is no longer beneficial to the patient is called A, aid in dying? No. B, euthanasia? No. Well, we defined all of those already. Correct? C, compassionate extubation. Okay. Changing gears. Shared decision making. This is a collaborative process that allows patients, their surrogates, and clinicians to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values, goals, and preferences. We have a spectrum between autonomy, where patients make their own decisions with the information given to them by health care providers, versus parentalism or paternalism. So I don't know which of these are more used in the literature, but the parentalism is just vaguely less sexist than the paternalism, but they mean the same thing. The health care provider provides information and provides strong guidance. Okay. And then in terms of the models, it ranges from patient and family decides more autonomous, where the clinicians are informative, to where the health care provider decides. This is more parentalistic, paternalistic directive. And then somewhere in the middle, shared decision making, more facilitative, where we kind of give information and a little guidance, collaborative, slightly more guidance. It's a huge spectrum. Most patients and families prefer something toward the middle, but it really is important to assess what their, the patient and family's decision-making goals and preferences are. So patient and surrogate preferences for decision-making roles regarding value-laden choices range from preferring to exercise significant authority to ceding such authority to providers. Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate. You don't need to make, to use shared decision-making with routine decisions, like whether or not to place an IV or check vital signs. Okay. Slightly different concepts, informed non-dissent, informed assent, a little different than informed consent, where patients and families need to report back to you all the risks and benefits of the choices they are making. Here, we are giving them a decision and they say, okay, thank you. So the clinician discusses the medical condition, explains the treatment options that are available, elicits values, goals, and preferences, and then the surrogate wishes for the clinician to make the treatment decisions. So we've elicited what they want and based on what their goals are, their general overall goals, and we make a specific recommendation for the plan of care so that the patient can receive care that's consistent with his or her values without the surrogate feeling responsible for the condition. And that's okay to do. Futility. Some more definitions. What is something that's futile? Interventions that cannot accomplish the intended physiologic goal. What is something that is proscribed? That's something that is not allowed, prohibited, legally not acceptable, legally discretionary. The law supports our refusal to administer. So that's like, we're not offering surgery here because it will cause more harm than good. That's fine. Potentially inappropriate. This is where a treatment has maybe some chance of accomplishing its physiologic effect, but the competing ethical considerations justify not providing the therapies. Things like offering or not offering, say, renal replacement therapy, mechanical ventilation, CPR. A lot of value-laden discussions here, even amongst clinicians. I'm not going to go into that. These are just definitions that you might see. In terms of handling requests for potentially inappropriate treatments, communicate, communicate, communicate. Consider an ethics consultation, as we discussed before. A seven-step resolution in intractable cases. I feel like I've talked through all these steps in other times, but we're not going through those in a ton of detail here. Enlist experts, give notice, second opinion, organizational committee internally. How about external requests, extramural appeal, and implement the decision. It is ethically acceptable to refuse to order the inappropriate treatment that the patient or family may be requesting. It's not appropriate. Okay. Question three. I think this is my last question. Which of the following is true when making decisions with surrogates? Clinicians adjust to the surrogate's preferred decision- making model. We talked about that. We have to elicit what they prefer, what their communication style is. Surrogates may choose inappropriate treatments if involved in decision-making. Well, not if they're not offered. A paternalistic model is used for surrogates with limited education. That's also not true. It depends on what their preferences are. And the physician presents the proposed treatment plan and gains surrogate permission to implement. I feel like this is close, but not quite. This is assent, consent, and we don't need to offer things that aren't appropriate. So the correct answer is to adjust to the surrogate's preferred decision-making model. All right. Closing out. Case one. What happened in this case? The staff is struggling with moral distress when they believe that moral distress is when you believe that what is being offered and done is ethically inappropriate. Well, he got ongoing supportive care. We all remember from COVID. If any of you, whoever was practicing in 2020, 2021, many people survived that we didn't expect they would survive. This patient was transferred to the LTCH after three months, and maybe he survived and went home and maybe not. In case two, metastatic ovarian cancer. The patient wanted comfort. The family wants everything. She was intubated, got trach, went to an LTCH, and intermittently awake and alert, and she died at the LTCH several weeks later. She wasn't able to make her own decisions because she didn't put it on paper beforehand. Case three, stroke with compassionate extubation. We continue to provide compassionate symptom directed care without any hastening of death. In 36 hours, he died. Later, he died in an inpatient hospice unit. So moral distress, what is that? I just described that. Painful feelings or psychological disequilibrium that occurs when constraints prevent one from following the course of action that one believes is correct. So sometimes we just kind of need to guide people past their moral distress because their ethics or their understanding of the case may not be 100% there. Sometimes we all have it ourselves, and sometimes that's our job to kind of wrestle for ourselves. Compassion fatigue, super common in the ICU population, a type of burnout specific to caregivers which can manifest as signs and symptoms of post-traumatic stress disorder for caregivers helping those with life-threatening illnesses. Sometimes compassion fatigue and moral distress can be interlinked and misdefined, but moral distress is when there's a feeling of an ethical conflict. Compassion fatigue is just, I am tired of this. Self-care, methods to promote well-being. We're all well accustomed with those now. And in terms of ethics in the era of COVID-19, there are always thoughts about allocation of resources appropriately. Visitor restrictions, those are no longer a big issue today. Unilateral DNR orders may be considered. That's institutionally dependent and not a universal law. All right. Thanks. That was a lot.

ethical dilemmas

clinical ethics consultations

doctrine of double effect

shared decision-making

beneficence

non-maleficence

moral distress