lecture are to be able to describe indications for unexpected outcomes of a clinical ethics consultation, to apply the principle of double effect to medication administration for the relief of suffering at the end of life, to differentiate between or among the terms aid in dying, euthanasia, and compassionate extubation, to discern futile versus potentially inappropriate treatments, and to describe ethically appropriate approaches to decision-making within a model of family-centered care. Mark is an 82-year-old gentleman in previously good health. He presents with fever, dyspnea, and respiratory distress, and is found to have COVID-19 pneumonia. At the time of his initial presentation, he was awake, alert, and conversant. However, he is intimated due to his worsening respiratory status. His clinical case is complicated by bacterial sepsis, anasarca, and poor nutrition. One month after presentation, a tracheostomy is placed. Two months after presentation, he remains in the ICU. He is still too unstable for discharge to a long-term acute care hospital. At the current time, we do not know the patient's wishes because he is too encephalopathic to communicate. His family says that we want to continue aggressive management so that we can get him back to his pre-COVID condition. Bedside clinicians, the nurses, the doctors, the therapists are all concerned that we are unethically prolonging his suffering. A second case, Patricia, she's an 86-year-old female. She's got metastatic ovarian cancer. She's admitted to the hospital with nausea and vomiting. A small bowel obstruction is found, and a venting G-tube is placed. There is no further chemotherapy available due to her declining clinical condition and her poor nutritional status. She has severe pain requiring frequent parenteral opioids. She then becomes abundant, and there is suspicion for hypercapnia. She's on the floor at this time. A rapid response is called to the acute care floor. An ABG is obtained and confirms her acute hypercapnic respiratory failure. The patient has previously stated that she is ready to die, and she would like to go in peace. Her family, however, wants aggressive measures, full code, full court press, everything that can be done. What do we do? Perhaps it is time for an ethics consultation, and we'll talk about what kinds of questions can be discussed and how to proceed. In terms of indications for an ethics consultation, I want you to think first, when have you called a consultation? When has someone else called a consultation on your case, and how did that make you feel? When are ethics consultations recommended in the family centered care guidelines? And can ethics committees be used to explore organizational as opposed to clinical ethics? In the guidelines, these were published in 2017 in Critical Care Medicine. The recommendation is we suggest that ethics consultation be provided to decrease ICU and hospital length of stay among critically ill patients for whom there is a value-related conflict between clinicians and family. This is a 2C recommendation, and a lot of the ethics and end-of-life types of guidelines will not have incredibly high-grade recommendations due to the challenges of getting good data. 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. So in terms of implementing a clinical ethics consultation, who, how, when, what is the process, what are the anticipated outcomes, and what family-centered care strategies may prevent the need for ethics consultations? I will backtrack a little bit to my own institution's ethics consult policy as a starting point. Our policies say that 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. Not limited to them. Anybody else can as well. 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. Concerns regarding goals of treatment. Need for clarification about difficult decisions or choices involved in care. And questions regarding advanced directives or surrogate decision-making. In terms of how to organize a review, these are some of the core ethical concepts to think about. So four topics, the medical indications, patient preferences, quality of life, and contextual features. It's important to consider core principles, frame an ethics question, and list ethical options. And you have to think about what is best for the individual, what offers the greatest good for the group in general, and what is best for the society at large. When we make decisions for those who can't decide for themselves, it's a balancing act between the best interest of those parties involved, as per the previous slide, and substituted judgment, which means that the patient making the decisions should speak for the wishes of the person who cannot speak for themselves. So who do you listen to? The patient or the family? This has evolved, but as per the Patient Self-Determination Act of 1990, advanced directives specified by the patient supersede the wishes of other patients involved. Surrogate decision-making is required if no advanced directive is available. And surrogates should exercise substituted judgment, as I mentioned previously, and not their own preference. So again, the definition of substituted judgment is, what would the patient have wanted done or not done if they were able to speak for themselves at this time? And best interest, what is in the perceived best interest of the patient at this time? A different case, John, he's an 84-year-old male with a history of coronary artery disease. He's had a cabbage. He has an extensive smoking history, diabetes, chronic kidney disease, and prior minor strokes. He presents to the emergency department from the nursing home with left arm weakness and slurred speech. He has extensive secretions. He's hypertensive. He becomes lethargic. He's intubated. He's transferred to the ICU, and MRI shows new ischemic strokes. He started on tube beads and dialysis. Four days later, he is on no sedation. He's unarousable to loud voice or sternal rub, and he does not open his eyes. He had previously discussed with his children that he wouldn't want to be kept alive on machines if he couldn't interact with his family members. The medical team recommends removing the ventilator and allowing him to pass peacefully. His daughter comes to you because she is concerned that she is euthanizing her dad. So we'll talk about three of the ethical principles that we operate under today. First, that withholding and withdrawing life support are ethically equivalent. There is an important distinction between killing and allowing to die and the doctrine of double effect. So first, we'll talk about withdrawal of life support. It is now the most common way to die in both adult and pediatric ICUs, and the most common life support withdrawn is mechanical ventilation. Most patients receive analgesia and sedation, yet clinicians are often uncertain of the boundary between palliative care, which can include in these situations sometimes general anesthesia and euthanasia. So it's really important to understand and follow the doctrine of double effect. There is a psychological difference between withdrawing and withholding, even if there is no ethical difference. Withdrawing feels active to the person making the decision to do that, i.e. the family member or the clinicians who are actively removing the life support. There is a sense of moral responsibility. Whereas withholding feels like a passive decision on the side of the decision makers or the clinicians. However, philosophically and legally, they are the same. There is no distinction, and every treatment should be assessed based on the benefits, burdens, and patient preferences. And the value of a potential therapy may be unknown prior to a therapeutic trial, whether that is vasopressors, mechanical ventilation, antibiotics, any other therapy. In terms of evolution of language, a terminal wean traditionally was known as a stepwise reduction of ventilatory support, leaving the artificial airway in place. This is on the ventilator, you step them down, step by step from a high level of assist control to a supported mode, dropping the pressure bit by bit. Historically, the patient could vary from several minutes to even several days or weeks, as opposed to a terminal extubation, where a patient is on the ventilator on whatever support they're on, and the therapist just extubates without adjusting the ventilator, rapid cessation, and removal of the artificial airway. A newer term that we're using more and more these days is the concept of compassionate extubation, often used interchangeably with the phrase withdrawal of mechanical ventilation, which emphasizes the goal of alleviation of suffering at this time, and alludes to the end of life. Allowing to die means that patients and surrogates have the right to refuse any life-sustaining therapy. If we do not perform CPR, if we do not intubate, we are allowing the condition to follow its natural course. Removing and refusing are therefore the same. The goal is to allow the underlying illness to run its course. Aid in dying is 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. At the time that they choose. After a full evaluation, a physician may prescribe this lethal prescription. This practice has laws that allow it to occur in Oregon, Washington, Montana, Vermont, California, Colorado, Hawaii, Washington, D.C., and the newest state not listed here is I believe New Mexico. Other names for this concept include physician-assisted death, physician-hastened death. The previously used term physician-assisted suicide is less preferred these days because of the stigma associated with the term suicide. Death with dignity is another phrase you might hear. It can refer to this end of life option as described above. Option as described above. State legislation regarding such an option or organizations that promote it. Euthanasia on the other hand is where a physician or provider physically administers medication that hastens death. And ethically, this is not acceptable anywhere nor is it legally acceptable. All right, so back to our case number three. John, our 84-year-old gentleman, a decision is made for a compassionate extubation. He started on a fentanyl infusion and he's extubated. He appears comfortable, he's unresponsive. Six hours later, his son comes to you and says, doc, can we make it go any faster? They're sitting around at the bedside and they are tired of sitting vigil. They're ready to go home, ready for their loved one to pass on to heaven. So here's where we talk about the principle or doctrine of double effect. It provides the ethical rationale for providing relief of pain and other symptoms with sedating medications when this may have the foreseen but unintended consequence of hastening death. So the distinction lies in the clinician's intent. So these medications are given to alleviate pain, discomfort, and dyspnea. And this must be documented and the doses selected must be appropriate for these things. There've been a lot of studies back and forth that have shown that sedatives and analgesics do not actually hasten death. Some studies have shown that with increased doses of benzodiazepines and opioids, the process may actually take a little bit longer. The theory is that the metabolic demand of the diaphragm and the full body for sustaining the extensive work of breathing is taken away so the patient is more comfortable and may survive longer. There've been some studies that show sooner death, some studies that show longer death, but the conclusion is there is no hastening. And again, this doctrine of double effect. So we've got the act, which is giving morphine, which may have a good effect, which is to relieve pain and dyspnea, and the bad effect, which it may speed death, theoretically. And so this first act is morally good or neutral with the good intended effect and the foreseen unintended bad effect. Ethically, it's okay. The bad effect is not the means to the good effect. It is just a side effect. And the good must outweigh the bad in these cases for it to be ethically appropriate. And, you know, you move it from philosophy to law. And so this is something that we all practice these days because it is now, 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. So this is at the level of the Supreme Court. So we've got a few options talking about ethical and legal end-of-life care. No morphine, which, depending on the clinical situation, may or may not be ethical. We do have a legal obligation to treat pain and suffering at the end of life. So if the patient has any signs of pain and suffering, it is appropriate to give morphine. It's not appropriate to withhold it. But if the patient has no symptoms, they have no need for morphine. How about morphine followed by an infusion of potassium chloride? The good effect is achieved through the bad effect. So the good effect of relief of suffering of death, the potassium chloride hyperkalemia leading to cardiac dysrhythmia and death is not acceptable. How about a large bolus of morphine prior to extubation? It depends on the dose of morphine that's given. So if the dose is too high, so what's an appropriate dose of morphine? Two milligrams, four milligrams, maybe even up to 10 milligrams. 100 milligrams, probably never okay. It's not plausible if you give 100 milligrams of morphine IV push that the intention in giving the morphine was just to relieve pain. How about neuromuscular blockade before extubation? Neuromuscular blockade makes a patient's face look super comfortable because they can't grimace. So they look very comfortable, but they have no analgesic properties. So they do not add to comfort and they actually stop respiration. So not ethical. How about the titrated administration of morphine? It shows that the intention is to relieve suffering. You give a dose, you watch, you monitor, you assess the symptoms, you give more higher dose if it's appropriate, lower dose if it's not. There is no ceiling for opioid dosing, but the dose must be necessary to make the patient comfortable. So it's ongoing clinical assessment. Some of you may recall this case in January of 2019 where a critical care physician in Ohio was flagged for potentially inappropriate dosing of fentanyl to patients occurring between 2015 to 2018, many of whom were terminal. So again, as in the previous slide, what are appropriate doses of fentanyl? 550, 100 mics? Sure. 200 mic doses? Possibly for somebody who has a high tolerance, who has been on high doses. The doses ordered were 500 to 2,000 micrograms IV push per the news reports. And like I said, similarly to the dose of 100 milligrams of morphine IV push, that's generally not considered an appropriate IV push dose. And this case is still ongoing. I looked it up in the news recently. And he was indicted for 25 counts of murder. There hasn't been a conclusion to this case yet. Back to the paralytic agents, it is never appropriate to give paralytics during the dying process to patients who have not already been receiving them. In general, when patients have been receiving paralytics, withdrawal of life support or ventilatory support specifically should be delayed until the paralysis has worn off or been reversed. When waiting for the paralytics to wear off, the neuromuscular blockade to wear off, if that would require an unacceptable delay in withdrawal of life support, then withdrawal may proceed with careful attention to the patient's comfort. So you have to be able to assess the comfort somehow. A few end-of-life pearls. It's important to clearly document and verbalize your intentions. Your goal is to provide comfort, not hasten death. Demonstrate your intentions with your actions, so titrate to effect. Anticipatory dosing, so dosing ahead of time, is necessary and appropriate before a compassionate extubation. And be prepared for the request. Please, can't we just get this over with, counseling the family with all these ethical concepts we just discussed? And document what you give and why. So you should be proud of providing excellent end-of-life care, appropriate symptom management at this time as an intensivist. Option one, which of the following is true according to the principle of double effect? Number one, choice one, total morphine dose is limited to 80 milligrams to prevent the secondary effect of respiratory depression. Two, hydromorphone plus morphine produces a better effect than single drug therapy. Option three, there is no dose limit to medications given to prevent suffering and not intend death. Four, because sedatives may induce both respiratory depression and prevent suffering, targets for each are included in the order we just discussed earlier. Number one is not true. There is, like I said, no dose limit. Number two, opioids all work similarly. So there is no additional benefit to adding a second opioid on top of a first opioid. Number three is true. As I said, there is no dose limit, no ceiling to medications given to prevent suffering and not intend death. Medications are titrated. And for option four, targets are set not for respiratory depression but really for symptoms. Question number two, removing the endotracheal tube and stopping mechanical ventilation that is no longer beneficial to the patient is called, one, aid in dying, two, euthanasia, or three, compassionate extubation. This is a more simple question. The answer is three, compassionate extubation. We're going to change gears a little bit more and talk about shared decision making. So what is the definition? Shared decision making is a collaborative process that allows patients or their surrogates and clinicians to make healthcare decisions together, taking into account the best scientific evidence available as well as the patient's values, goals, and preferences. In terms of the spectrum and some other definitions we need to think about is, one, the concept of autonomy where healthcare providers provide information and patients or families make their own informed decisions. The healthcare provider does not provide any opinion or guidance, just information. On the flip side, there's the concept of paternalism or perhaps more generally less gendered parentalism where the healthcare provider acts as a guardian. The physician provides information that will enable the patient to consent to treatment that the physician considers optimal. We say, hey, this is what we're going to do. This is what the next steps will be. Is that okay? Very parentalistic. In terms of the models, there's lots of different models with different terms with similar concepts where the spectrum ranges from where the patient and family do all of the decisions or the healthcare provider makes all of the decisions. So informative, this is more autonomous where the clinicians provide info but do not make a recommendation versus directive or parentalistic where the healthcare provider offers some information and makes the decision. In the middle of that is shared decision making which still can range on a spectrum from more facilitated where the provider will elicit patient values, place that in context, maybe offer some options but does not offer a definitive recommendation. And collaborative where the provider elicits patient values and based on those values makes a specific recommendation. What do decision makers prefer? In the ICU, it is not very preferred for the family to make all of the decisions. It seems a little bit of too much burden on the families. Almost all patients and families will fall somewhere in the middle of the shared decision making spectrum with favoring a little bit on either side of where the family makes the decision with some physician input or the physician makes decisions with the family input and some just want the physician to make the decision. When it is value laden, it may be a little bit more complicated but again, it's just this continuum, the spectrum from patient responsibility over to physician responsibility with people preferring something in the middle. Regarding shared medical decision making, patient and surrogate preferences for decision making roles regarding value laden choices range from preferring to exercise significant over authority to ceding such authority to the providers. And we as clinicians should adapt the decision making model to the needs and preferences of the patient or surrogate. When does shared decision making not need to be used? When decisions, medical decisions, how often do we check vital signs? How often do we get labs? Is it once a day? Is it four times a day? That's a clinical decision that does not have any values attached to it. The clinicians can decide. Do they get to decide if they want lactated ringers, D5W, normal saline, some sugar, some saline? No. That's a decision that the clinician makes. Antibiotics, do they want antifungals? No, it's not appropriate. They don't have a fungal infection. And what doses? How frequently? Those are medical decisions to be made by the clinicians, by the pharmacist, by the medical team. They are not value-laden decisions. So the family's values do not need to be taken into account. Now this concept of informed non-dissent or informed assent, the clinician discusses the medical condition, explains the available treatment options, and then elicits the patients or the parents or the children's or the surrogate's values, goals, and preferences, and then makes a recommendation. Sometimes a surrogate wishes for the clinician to make the treatment decision. Why is this? Because they are too overwhelmed, because they can't, because it's too much moral responsibility for the decision maker. This allows the patient to receive the appropriate care consistent with his or her values without the surrogate feeling responsible for the decision. I'm sorry, we don't have anything further to offer. We will not offer CPR at this time. We will not offer any more surgery. We can't. It won't help, period. We've already done everything that we can, period. And sometimes this allows families to accept what has happened and what is coming next. On the flip side, the critical care groups have come together to make a policy statement about responding to requests for potentially inappropriate treatments in intensive care units. So a few more definitions as we are moving past futility. Something that is truly futile is an intervention that cannot accomplish the intended physiologic goal. Something that is proscribed is prohibited by law. And something that is legally discretionary is where the law supports the physician's refusal to administer something. Something that is legally inappropriate, on the other hand, there may be some chance of accomplishing its intended effect, but the clinicians feel that competing ethical considerations justify not providing these therapies. So how do we handle these requests? Number one, always. The most important thing is to increase communication. Good communication, good listening can prevent a lot of these conflicts. An ethics consultation to explore the positions of all those involved, as we mentioned earlier. And then this seven-step resolution in intractable cases. So again, in the guidelines, one, enlist expert help. Ask other people. Ask consultants. Two, give notice to the surrogates. This is, is this in person, if they can't be reached, sending a letter. Obtain a second opinion. Something in your own institution. Perform a review by an organizational committee that includes non-clinicians as well. Offer the family opportunity for transfer to another institution. This may not always be accepted by another institution, but offering to attempt to transfer. The idea of an extramural appeal, so asking outside, again, somebody outside, and then implementing the decision of the resolution process. This is quite time-consuming. So if communication can forego this lengthy process, that would always be preferred. And it is ethically acceptable to refuse to order whatever value-laden inappropriate treatments the family is requesting at this time. So our third question, which of the following is true when decision-making with surrogates? Option number one, clinicians adjust to the surrogate's preferred decision-making model. Option two, surrogates may choose inappropriate treatments if involved in decision-making. Option three, a paternalistic model is used for surrogates with limited education. Option four, a physician presents the proposed treatment plan and gains surrogate permission to implement. So the correct answer here is option one. The clinician should adjust their communication and decision-making to the surrogate's preferred decision-making model somewhere on the shared decision-making spectrum, ranging from autonomy to parentalism. Option two is not correct because inappropriate treatments should not be offered. Option three, you know, some highly educated surrogates may prefer a paternalistic model. Some surrogates with limited education may prefer to be much more hands-on about that. And option four, it, again, really depends on the decision-making preference of the family. This option is describing the concept of informed non-dissent or informed assent. So closing out the cases, just going back. Case one was a COVID patient where the family wants everything and the staff is struggling with some moral distress. In this case, the patient received ongoing supportive care. Three months after his, he had a three-month stay in our ICU, and after that, he was transferred to a long-term acute care hospital. I don't know what the final outcome was. I have not seen him again, but most of our patients who were struggling with long COVID stays actually did pretty well. Case number two, our metastatic ovarian cancer patient. She wants comfort, but the family wants everything. So she was intubated. She had a tracheostomy placed. She was transferred to a long-term acute care hospital after many extensive meetings. During these meetings, the patient was unable to speak. Her family perhaps was not exercising substituted judgment ideally, but the patient said she deferred to her family, and she did die at the LTAC several weeks later. Case number three, our patient with a stroke. He was compassionately extubated. This was not euthanasia, as we discussed. He was provided comfort. He did not hasten it, but allowed his condition to take its natural course, and about 36 hours later, he died comfortably in an inpatient hospice unit. So I just want to take a moment to talk a little bit about moral distress, burnout, and self-care, some concepts that many of us have been struggling with more this year than ever before in the time of COVID intensive care unit. So the definition of moral distress is our painful feelings or psychological disequilibrium that occurs when constraints prevent one from following the course of action that one believes is correct. So I ethically believe that this is the right way to go, but my partners, but my institutions say that I have to do this other course of action. Post-traumatic stress and fatigue, on the other hand, does not have anything specifically about ethics, but really a type of burnout specific to caregivers, all of us, and it can manifest as signs and symptoms of post-traumatic stress disorder for caregivers helping those with life-threatening illnesses, really present in any caregivers that have taken care of patients during this pandemic. And lastly, self-care, methods to promote wellbeing, ensure work-life balance, and improve mental health in caregivers. The goal of self-care is to decrease compassion fatigue so that after a week off, you can go back to the ICU and continue providing good, compassionate, critical care to the spectrum of your patients. And here is just a question. I don't think it will be on boards too much this year, but I just wanted to bring them up as something to consider. Ethics in the era of COVID-19. There are questions about allocation of resources, allocation of ICU beds, ventilators, ECMO, staff are even in short supply. What about the ethics of visitor restrictions? It's heartbreaking for all of us to see our patients dying without families surrounding them. And then the ethics of a unilateral DNR. So I'm not going into a lot of detail on each of these, but just know that these concepts are there. You as the bedside physician should not be involved in the discussion of allocation of resources, but those should be a third-party decision by somebody who is not emotionally involved in the care of the patient at the bedside. That's all I've got. Thank you so much. Here are some of my references. And another slide of references. These are some of the key resources, the guidelines in particular. And just a few more options. Some of the articles may be listed twice.

ethical dilemmas

clinical practice

clear communication

shared decision-making

patient autonomy

symptom management

ethical decision-making