Hello, this is Aarti Sarwal, I am a professor in Neurology and over the next few minutes I will go over some ethics, communication, prognostication and decision making issues in the ICU. I have no relevant disclosures. We will specifically review the principles of communication with families, determining decision makers and conflict resolution. We will summarize the approaches to fertility, uncertainties of prognostication and self-fulfilling prophecy that is not that uncommon in neurocritical care even in this decade. We will describe the nuances of advanced care planning with advanced directives, DNR orders and the concept of withdrawal of treatment and discuss the ethical aspects of donation after cardiac death and care of the organ donor. We all are familiar with the principles of ethics. The five principles of medical ethics emphasize social justice or equity, non-maleficence, beneficence, respect for autonomy and disclosure. Respecting the right to self-determination is central to medical treatment and care, whether it comes to withdrawal of life-sustaining therapies, respecting their cultural and religious preferences, making sure that the patient has a durable health power of attorney or advanced directives to be able to express their preferences for goals of care and then implementing these orders in terms of medical physician orders for scope of treatment all comes under the same principles. In general, the shared decision model is the best model to follow in situations, especially at the end of life, and there's really no room for unilateral decisions, specifically the paternalism that we've seen in medicine over the last few decades. So what is shared decision making? Shared decision making is the collaborative process that allows patients and their surrogates to make healthcare decisions together using the best scientific evidence available given by the clinicians, but that values patients' cultural values, personal values, goals and preferences. There have been many systematic interventions that have been investigated to improve shared decision making by the surrogates. It may reduce ICU length of stay among patients who die in the ICU, but we haven't quite seen an influence over mortality. But shared decision making is a key feature emerging in patient-centered care. It is not just something that we do as a matter of improvement, it is our fiduciary responsibility that we accomplish the basic steps of shared decision making involving patients or their surrogates in their healthcare decisions, use the best scientific evidence and make sure that's available to them and comprehended by them and honors their values and goals. The two good references for that would be the statement by the American College of Critical Care Medicine and American Thoracic Society that talks exhaustively about shared decision making in the ICU environment, and there's another systematic review and meta-analysis that talks about different interventions that help surrogates making decisions and their impact on ICU outcomes. The statement by ATS and SCCM has a stepwise approach to addressing the major strategic priorities regarding shared decision making and has advice on key communication skills to involve patients or surrogates in treatment decisions, establishing a trusting partnership, providing emotional support, assessing their understanding of the situation as you explain the medical situation in simple language, highlighting that there is a choice and making sure that those choices are known to the surrogates, when necessary explain what surrogate decision making is and what their responsibility is with regards to being an advocate for patient's decisions, assess their preferences, explain treatment options, elicit the patient's values, goals, and preferences through the surrogate as you deliberate with them, and obviously inform such communication skills to help the surrogates come up to some consensus on treatment decisions. And there are quite a few preference-sensitive decisions that we make in the ICU that can benefit from such communication skills. A classical example in the new ICU is a patient is herniating from a malignant cerebral edema and you are at a threshold of a choice whether you should offer patient decompressive hemochronic me or not versus medical treatment. Now, there are some signals of offering one treatment over the other, but whether the patient decides through their surrogates to accept that treatment or not should be done via shared decision making. Certain examples would be surgical treatment for epilepsy or transitioning the patient to palliative care, especially in terms of mechanical vent dependence. The ABCDEF bundle in critical care also emphasizes family engagement and empowerment as one of the six key components based on the last Paris guidelines. People have researched different components of ICU family-centered care, and the recommendations in general favor family presence in the ICU, their participation in interdisciplinary team rounds, offering them the best option for being present during resuscitation efforts if they feel comfortable, supporting the family through education programs, ICU diaries, and some validated decision support tools, which we'll talk about in a little bit, which unfortunately are lacking in core neurocritical care illnesses and is a major research gap that needs to be addressed. Other family-centered care recommendations include routine interdisciplinary family conferences and recommendations that ICU clinicians receive some kind of formal communication training on how to do family-centered decision making and discussions. The family-centered care also encourages consultations with palliative care, ethics, social workers, family navigators, as well as chaplaincy, pastoral care, and spiritual support as applicable in the patient scenario. There are recommendations for environmental factors like noise reduction from alarms, some hygiene practices, as well as family sleep. In general, the five values that are advocated by family-centered care recommendations are to make sure that we value family statements about patient's clinical condition, patient choices, patient's progress. We acknowledge emotions. Everybody handles grief differently. We listen. We understand the patient as a person. And we, as the provider team, elicit questions about what the family is going through, the challenges they are having in trying to navigate the critical illness, and anything we can do to help them navigate through the difficult choices they might have to make on a daily basis, even in patients with full aggressive care. Presence of family on ICU rounds has been shown to be beneficial and has not been shown to interfere with education or communication processes. In addition, routine ICU family conferences, palliative care consultation, or ethics consultations, as the situation demands, can reduce ICU length of stay, especially for patients whose trajectory is ultimately mortal. Family presence during CPR has been researched extensively with mixed emotions from people. But on evidence-based perspective, it has shown positive results on psychological variables and has not shown to interfere with medical efforts, increase the stress in the health care team, or result in medical-legal conflicts. People have seen signals that relatives who did not witness CPR had symptoms of anxiety and depression more frequently than those who did witness CPR. Now the question comes in. There are outliers in each fact we handle in the critical care space or science in general. How do we handle disruptive behavior in case an outlying family member doesn't engage positively despite the measures that we discussed in the last few slides? Joint Commission does have some guidelines on sentinel event alert, which includes disruptive behavior as a sentinel event in the critical care space and clinical space, so educating all team members on appropriate behavior that is defined by the organization's code of conduct, knowing that they're empowered to manage disruptive behavior by families, which hopefully occurs only on a rare basis, enforcing the code of conduct consistently, and developing institutional policies that support staff morale about how the disruptive behavior is handled, making sure that the medical-legal process around it is robust and both patient-centric for that matter, but also addresses staff concerns, develop a process by which staff can address disruptive behavior, training in conflict resolution, especially for responders when these situations have to be escalated, and developing some interventions that commit the leadership to processes that ensure the well-being of all staff in high-equity, high-stress environments, especially for the kinds that we've seen recently with restricting family visitations in the pandemic. Encourage interprofessional dialogues and obviously document all attempts to address behavior. Now, in neurocritical care units, we specifically get challenged with futility, uncertainties of prognostication, and this phenomenon of self-fulfilling prophecy. Outcome prognostication is kind of neurocritical care bread and butter. On literally a daily basis, we make decisions about tracheostomy, feeding tubes, implementing DNR orders. Goals of care are a daily part of our evaluation and management of patients, deciding whether we should withdraw care or we should continue care. And the challenge in neurocritical care is longer-term patient-centered outcomes based on these decisions is often lacking. And most of the time, we withdraw care on a patient that we realistically think is not going to do well. The patient passes away, and that's what we define as self-fulfilling prophecy. In other critical care literature, people have talked about shared decision-making tools or decision aids, which are actually prioritized by the Patient Protection and Affordable Care Act of 2010 and Healthy People 2020. It has been advocated that these decision aids must contain the pre-specific data that is tailored to the patients and their proxies and be simple and time-efficient for physicians to use. There is an international patient decision standards collaboration that has formulated criteria to determine the quality of patient decision aids and inform further research on this topic. For neurocritical care in general, a good resource is cited here that talks about the unmet need of shared decision-making in the neurocritical care unit and the lack of decision aids and the research gap that it has created. Because of these uncertainties in prognostication, lack of long-term data, therapeutic nihilism in perceiving a bad quality of life for most of our patients, withdrawal of care continues to be the most common reason for death in neurocritically ill patients. Most of the acute brain injury patients suffer from some degree of self-fulfilling prophecy and clinical nihilism, although it's getting better with more emerging aggressive interventions and increasing shared decision-making acceptance in the neurocritical care unit. But despite that, there continues to be high variability in withdrawal of care recommendations in various subspecialties when they are surveyed. So, there is not enough concordance amongst different teams participating in the care of the patient when it comes to withdrawal of care recommendations. There seems to be an emerging consensus on futile interventions or potentially inappropriate treatments, but because of the multidisciplinary nature of the neuro ICU and the multiple hands in the kitchen, I would say, families often feel under-informed by physicians or they get mixed or biased messages from different providers and medical services. A very nice response to the ATS policy statement on potentially inappropriate treatments in the intensive care units was done by neurocritical care societies and representatives, and they talked about how disputes in neurocritical care that lead to ethics and palliative care consultations were more so often because of quality of life predictions rather than physiological concerns when it came to potentially inappropriate treatments. When talking about what the patients would want for goals of care, obviously the question comes on informed consent. We all are familiar with informed consent, which is pretty much a daily part of our jobs, but on a granular level, to obtain informed consent or to refuse treatment for that matter, a clinician must ensure that the person making that decision, whether it is the patient or the surrogate, has decision-making capacity. You have to disclose risks and benefits of a procedure or treatment, and you have to disclose alternatives. You have to evaluate whether the receiving person, the patient or the surrogate, has comprehended these risks and benefits, and after this information, they have given you voluntary agreement to proceed with that procedure. And we always talk about capacity. So, this capacity assessment basically involves understanding the information delivered to the patient or the surrogate about the proposed test or treatment that has been received in a manner where they show appreciation of how it applies to their situation. Capacity assessment also requires reasoning to make a choice, and then communication of that choice effectively to the person determining capacity. So, these four components will determine capacity. It can be performed by any clinician who will obtain informed consent, and it must be guided by these four components discussed above. Also remember, capacity is dynamic. You may have capacity to make a decision about whether you want a certain food item or not, but you may not have capacity to understand implications of long-term, life-sustaining interventions. It is also task-specific, procedural versus big things in life. So, a little more understanding of how to determine capacity and awareness of the components of informed consent does go a long way in improving the collaborative relationship in delivering patient-centered care and shared decision-making. Decision-makers, typically surrogates, are the ones that we talk to in the neuro-ICU because patients typically do not have the capacity to communicate or make decisions from acute brain injury. A surrogate will typically serve as the patient's representative and ideally should be chosen by the patient for this role when they're able to make a choice. So, that's community awareness. Please make sure that you have assigned your surrogate. If there is no assigned surrogate, it's typically next of kin that performs substituted judgment. Their job is not to make decisions on the patient's behalf. Their job is to make decisions on the patient's behalf as if the patient was able to make these decisions or to the best of their understanding on what the patient would have decided in the situation. Now, say you don't have a surrogate and you don't have a next of kin. Then, based on the surrogate's family, friends available, you try to make a decision based on the best interest of the patient, what most people in that condition would want. These are kind of the chain of decision-making when it comes to determining decision-makers. Now, if there is nobody to speak of the patient and the patient can't speak for himself, there is a legal process to assign a guardian that is typically assigned by a judge in the court of law. And for that, you have to have a legal determination. It's not a medical determination, a legal determination that the patient is decisionally incompetent. Different states have different laws about how such decision-maker surrogates are decided. So, it's extremely important that you are aware of your state laws on this chain of going down of how to assign decision-makers. Next, I want to talk about donation after cardiac death, which is a significantly ethically challenging principle, but has had guidelines from American Medical Association. In general, the ethical guidelines about donation after cardiac death is that physicians should support innovative approaches that increases the supply of organs for transplantation, but they must balance this obligation with their duty to protect the interests of their individual patients. So, what donation after cardiac death applies is an opportunity to discontinue life support under the conditions that would permit the patient to become an organ donor by allowing the organs to be removed promptly after death is pronounced. It is different than what we call it the cadaveric donor, where death occurs and then you decide whether the patient's donor or not and what the restricted donation that can happen after that. There are guidelines from the principles of medical ethics by American Medical Association, which recommend that there needs to be clinical criteria for identifying prospective donors in the institutes, and there needs to be policies laid down for governing donation after cardiac death. The decision to withdraw life-sustaining treatment needs to be made prior to and needs to be independent of any talks about donation. The consent specifically to the use of interventions intended not to benefit the patient, but to preserve organs needs to be done. So, you have to consent for procedures or resuscitative efforts that will be continued that otherwise would not benefit the patient. And despite that, you have to follow standards of good clinical practice and palliative care. These are a few reference guidelines to know about ethics communication and family-centered care that I would highly recommend you to review. I hope you have a good day.

ethics

communication

prognostication

decision-making

ICU

family-centered care