Chapter 81: Ethics and Palliative Care in the Intensive Care Unit

With the inevitable advancement in technological innovation and the aging of the population, more patients with chronic medical problems will face complex medical decisions in intensive care units (ICUs). Although most ICU patients survive, many deaths occur in or directly following an ICU stay.¹ Dying in the ICU has become a negotiated process, most often requiring some limitation of life-sustaining treatments.² ICU survivors struggle with physical and psychological symptoms, and functional and cognitive impairments, and their families struggle with caregiver strain in the face of an increasingly fragmented health care system.³ Patients come to the ICU with diverse expectations and values but are often too incapacitated to fully express them. Families, in the face of their own grief and bereavement, are asked to represent the patient, often weighing the possibility of impaired survival or death with the hope of recovery. All of these factors combine together to make the ICU a clinical arena rife with potential for conflict, making it increasingly important for the ICU clinician to be able to integrate the principles of bioethics and palliative care into the clinical care they provide their patients in the ICU.

This chapter will first discuss the key ethical principles and theories that provide a framework for medical decision-making in the ICU. Second, it will review the key legal cases in the United States that have informed the way in which care is negotiated in the ICU. Third, it will review medical decision-making, focusing on surrogate decision-making and the shared decision-making model in which the patient or the family play an active role in decision-making along with the clinical team. Fourth, it will define palliative care and discuss the integration of its principles into the care of the critically ill patient. Fifth, it will discuss futility conflicts in the ICU. Finally, it will review the principles and practice of withdrawing life-sustaining treatments in the ICU.

Many different approaches to ethical analyses exist. This chapter will review the main approach—principlism—in depth and then briefly summarize other approaches that clinicians can consider.

Principlism

Beauchamp and Childress delineated four principles—beneficence, nonmaleficence, autonomy, and justice—that provide an ethical framework for moral deliberation in medicine.⁴

The principle of beneficence refers to the clinician’s duty to act for the benefit of the patient. An extension of beneficence is the principle of nonmaleficence, which imposes an obligation on the clinician to not inflict harm on the patient (associated with the maxim: Primum non nocere, “above all, do no harm”). These principles of beneficence and nonmaleficence underlie the fiduciary relationship between the physician and the patient and are the two oldest ethical principles in medicine.⁵ Within the Hippocratic tradition, under the beneficence model, the physician relied exclusively on their own judgment to decide what was best for the patient and would exercise that authority over an obedient patient. In this model, the disclosure of information by the physician to the patient was strictly for the patient’s benefit and physicians often practiced “benevolent deception,” whereby medical information was withheld or misrepresented to the patient for fear that it might adversely impact the patient’s health.

The principle of autonomy in bioethics refers to the fact that the patient should be free of controlling influences and limitations that prevent a meaningful choice (ie, the right of self-determination). The word autonomy is derived from the Greek words autos (“self”) and nomos (“rule”). With the rise of autonomy as an important ethical principle of medical practice, medical decision-making changed significantly: The modern physician must now integrate the patient’s choices with his or her own clinical judgment and the patient always has the right to refuse any treatment.⁵

Justice—the fourth ethical principle—is usually defined as the fair distribution of medical resources. This principle, by acknowledging the importance of treating similar patients in a similar fashion, is usually situated in a larger society or organization, rather than in an individual clinician—patient encounter. This principle provides a strong mandate to remove barriers of access to medical care and to eliminate health disparities within health care. In the era of rapidly rising health care costs, questions about how to fairly allocate the expensive, resource-intensive treatments provided in the ICU are often asked under this ethical principle.

Ethical principles alone cannot guide clinical practice; rather, they provide a rubric through which clinicians can identify ethical dilemmas in clinical practice. Respect for autonomy may clash with beneficence when patients refuse treatments that the physician thinks are in their best interest. The ethical responsibility of the individual physician to use medical resources responsibly can put justice in conflict with autonomy when patients request scarce medical resources needed by others who are more likely to benefit from their use.

Other Approaches to Ethical Analysis

There are other approaches to ethical analysis—besides principlism—that may be relevant to ICU care.⁶ Casuistry approaches ethical reasoning incrementally through the analysis of the features of a specific case and looks to paradigmatic cases for the best resolution of current ethical dilemmas. Narrative ethics focuses on the specific story of the actors involved in the ethical dilemma and uses narrative methods to enhance the moral imagination of the clinician to help determine an ethically appropriate course of action. Virtue ethics focuses on the moral character of the clinician, his or her attempts to meet a particular standard of action. This theory provides impetus for the development of ethical wisdom in novice clinicians by improving their affective and intellectual reasoning skills. Relational ethics emphasizes the care of the whole person in clinical ethical deliberation. Specifically, the patient’s personalities, values, pasts, hopes for the future, relationships, roles, and responsibilities are all considered in the ethical analyses.⁶ This theory’s emphasis on the relational and emotional aspects of medical decision-making is particularly relevant to palliative care and the integration of its principles into the ICU.

Informed Consent: Legal History

The legal doctrine of informed consent extends from the primacy of autonomy in medical practice. In one of the foundational opinions that would plant the seed for the informed consent doctrine, Judge Cordozo, in Schloendorff v. Society of New York Hospital (1914), wrote that “every human being of adult years in sound mind has a right to determine what shall be done with his own body; a surgeon who performs an operation without the patient’s consent commits an assault for which he is liable for damages….”⁷

After the travesty of the widespread experimentation on human subjects during World War II, the Nuremberg Code established the voluntary consent of the human subject as an essential step in the ethical conduct of research. With the unveiling of questionable research practices that continued in the United States through the 1950s and 1960s, there was an erosion of the public’s trust of the physicians’ capacity to ensure the well-being of their patients. Through the then emerging field of medical ethics, an array of voices—lawyers, policy makers, legislators, theologians, philosophers—entered the arena of medical decision-making with the hope of protecting the patient from the imbalance of knowledge inherent in the physician–patient relationship. These voices suggested that medical decisions should include technical as well as value-laden choices that reflect the moral views of the patient, their family, and society.⁸

In Salgo v. Leland Stanford University Board of Trustees (1957), the Court of Appeals of California found that the physician in obtaining consent must disclose “all facts which mutually affect his rights and interest.” In Canterbury v. Spence (1972), another U.S. court ruled that “true consent to what happens to one’s self is the informed exercise of a choice, and that entails an opportunity to evaluate knowledgeably the options available,” which can only be accomplished when a patient is able to look to the physician “for enlightenment with which to reach an intelligent decision.” In the same year, the American Hospital Association published its Patients’ Bill of Rights, which enshrined the informed consent doctrine into the lexicon of medical care by establishing that the patient had the right to make decisions about their treatment and the right to refuse any medical treatment.

Informed Consent: The Process

Informed consent is a process of decision-making that requires the participation of the patient and strives for mutual respect between the clinician and the patient. Key elements of informed consent include (1) disclosure of relevant information to the patient; (2) the patient’s ability to understand the information; (3) the patient’s capacity to make a decision; and (4) the patient’s ability to express their choice voluntarily (ie, free of coercion, manipulation, or deception). Patients are deemed to have decisional capacity if they have (1) the ability to communicate a choice freely; (2) the ability to understand the relevant information; (3) the ability to appreciate the situation and its consequences; and (4) the ability to reason and deliberate about the treatment options provided.⁹ In the critical care setting, the assessment of the decision-making capacity can be complicated by the need for rapid assessments because of the time pressure in emergency settings and the fact that critically ill patients often have an altered mental status that may make quick assessments difficult. In an emergency situation when the patient lacks any of the requisite abilities for decisional capacity, clinicians turn to surrogate decision-makers or legal documents detailing the patient’s desires. If no surrogate decision-maker is found and there is an emergency, the clinician may intervene under the presumption of implied consent.

Some broad understanding of the key legal cases involving the limitation of life-sustaining treatment and the provision of palliative care will help clinicians improve their practice in this important aspect of ICU care.^7,10,11 The first and most important case was the Quinlan case decided by the Supreme Court of New Jersey in 1976. Karen Quinlan was a 22-year-old woman in a persistent vegetative state, who was receiving mechanical ventilation in a New Jersey hospital’s ICU after presenting with a drug overdose and suffering a cardiac arrest. Her father felt that his daughter would not want to remain alive in such a state and he wanted to be named her guardian so that he could order the removal of the mechanical ventilator. The hospital and the physicians involved in her care refused, arguing that removing the ventilator would be euthanasia. The Supreme Court of New Jersey reasoned that Quinlan would have refused further treatment and that she had the right to refuse any life-sustaining treatment. Since the patient was incompetent to exercise that right, the court further ruled that the only practical way for that right to be maintained would be for the family to render their best judgment as to whether she would exercise it in these circumstances.

By ruling in this way, the Quinlan court rejected any distinction between withholding and withdrawing life-sustaining treatment and acknowledged the importance of surrogate decision-making in end-of-life care. The Quinlan opinion also went further by acknowledging the limitations of the law in resolving future conflicts in this arena and encouraged the use of hospital ethics consultation as a more appropriate mechanism for resolving these conflicts in the future. By 1991, this recommendation for an ethics consultation was operationalized through the Joint Commission on Accreditation of Healthcare Organization’s (JCAHO’s) requirement that (1) hospitals follow ethical behavior in its care, treatment, services, and business practices, and (2) they establish and maintain structures to support patient rights; these include patients’ right to refuse care and patients’ wishes relating to end-of-life decisions.⁸

In the years following Quinlan, multiple court cases in the United States firmly established the right of the competent patient to refuse any medical treatment. However, there was considerable variation in how different state courts felt it best to exercise this right of refusal for life-sustaining treatments in patients without decisional capacity. The issue of how different U.S. states dealt with the patient’s right to refuse life-sustaining treatment first came to the U.S. Supreme Court through the Cruzan case.

Nancy Cruzan was a young woman hospitalized in Missouri in a persistent vegetative state after an automobile accident, who required artificial nutrition and hydration to stay alive. The family requested that the feedings be stopped because they felt that Nancy would not have wanted to continue treatment in her health state. The Missouri State Supreme Court ruled in 1988 that since the state had a legitimate interest in preserving life, life-sustaining treatments could only be removed by surrogate decision-makers if there was “clear and convincing evidence” confirming that the particular patient would have rejected such treatment.

The U.S. Supreme Court, in Cruzan v. Missouri Department of Public Health (1990), recognized the constitutional right of the competent person to refuse life-sustaining treatments of all types, including life-saving hydration and nutrition. At the same time, the Supreme Court affirmed the Missouri State Supreme Court by ruling that the United States Constitution did not prohibit a state from having a high evidentiary standard (clear and convincing standard lies somewhere between the civil standard of a preponderance of the evidence and the criminal standard of beyond a reasonable doubt) for surrogate decision-making regarding life-sustaining treatments.

In a concurring opinion, Sandra Day O’Connor suggested a larger role for advanced directives as a potential mechanism to safeguard the patient’s interest in directing his or her medical care in the event that they become incompetent. Influenced by Sandra Day O’Connor’s opinion, Senators Danforth (of Missouri) and Moynihan (of New York) enacted a law entitled the Patient Self Determination Act (PSDA), which became law in 1991 and required health care institutions to provide adult patients with information about advance directives upon admission.

In Washington v Glucksberg and Quill v. Vacco (1997), the question presented to the U.S. Supreme Court was whether prohibitions against physician-assisted suicide offended the United States Constitution. The Supreme Court concluded that terminally ill patients do not have the right to physician-assistance in suicide under the United States Constitution.

However, the Supreme Court did rule in favor of a patient’s constitutional right to obtain relief from suffering, including terminal sedation. Justice O’Connor in Glucksberg inferred a constitutional right to “obtain relief from suffering” and Chief Justice Rehnquist in the majority opinion in Vacco v. Quill invoked the doctrine of double effect in his affirmation of the practice by clinicians of relieving pain with medicines, even if those medicines come with the possibility of hastening death.¹¹ The doctrine of double effect is a Catholic moral argument that tries to make distinctions between intended effects and merely foreseen effects by permitting an act to be done that may have two foreseen effects, one good (such as relieving pain) and another harmful (such as death), when the intent is to produce the good effect and the harmful effect is foreseen but not intended. This doctrine, although philosophically imperfect, provides justification for the use of opioids and sedatives to maintain the comfort of the patient, even if the clinician sees the potential that the drugs may shorten the time to death.

In general, when asked to resolve disputes between families who request potentially inappropriate treatment and physicians who oppose it, courts in the United States have been reluctant to withdraw treatment that would lead to death over the objection of the family.¹¹ In the case of Helga Wanglie, an 86-year-old woman was in a persistent vegetative state after a series of medical complications over the course of several months, and was chronically dependent on the mechanical ventilator. The hospital wanted to remove the mechanical ventilator citing that the respirator was nonbeneficial. The patient’s family objected on moral and religious grounds. The hospital then went to the Court asking for an independent conservator to make medical decisions for the patient instead of the family, but the court rejected the hospital’s request. On the other hand, courts have also been reluctant to punish clinicians who act carefully and within professional standard to limit life-sustaining treatments. In Gilgunn, a Massachusetts jury imposed no liability on the hospital or the clinicians after they removed the ventilator from a terminally ill patient over the objection of her family.

In response to Quinlan and Cruzan, U.S. states began to pass laws providing for the use of advance directives in which people could state what they wanted to be done in the event they became seriously ill and could not participate in their own medical decisions. In the living will, the patient anticipates a specific set of medical circumstances and can request or refuse specific types of treatment under each of these medical circumstances. With the durable power of attorney for health care (or health care proxy) form, the patient can choose in advance a surrogate decision-maker in the event they become unable to make medical decisions for themselves.

Advance care planning is the process by which patients, with facilitation by a trained professional, clarifies their current health state, goals, and objectives. Since living wills cannot be expected to anticipate all of the specific circumstances the patient could face in the ICU, families and/or surrogate decision-makers still need to understand the patient’s wishes and values. Studies show that when families are included more upstream in the advance care planning process, advance directives may be helpful in aligning care with patient’s preferences and in supporting surrogates during their decision-making for the patient.^12,13

In the United States, a growing number of states have established templates that allow written directives to be translated into medical orders and can be accessible across multiple venues in the health care system.¹⁴ POLST (Physician Orders for Life Sustaining Treatment) and MOLST (Medical Orders for Life-Sustaining Treatment) are examples of these templates that allow patients with advanced illness or frailty and/or the surrogate decision-maker to have an advanced care planning conversation about whether they want specific life-sustaining treatments in the event of an illness exacerbation.¹⁵ Such forms usually enable a discussion of three categories of life-sustaining treatments: cardiopulmonary resuscitation in the event that the patient becomes pulseless; approaches to medical interventions in the event of an acute illness; and artificially administered nutrition and hydration in the event the patient cannot take fluids by mouth. Within “medical interventions,” the POLST cues the clinician to three levels of possible intervention: “comfort measures only”; “limited additional interventions,” which add to comfort measure treatments such as antibiotics, intravenous fluids, and cardiac monitoring but avoids mechanical ventilation or ICU level care; and “full treatment,” which further adds a trial of life-sustaining treatments with no limitations in treatment (eg, intubation, advanced airway intervention, mechanical ventilation, cardioversion, transfer to the hospital, and ICU). When such forms are completed, they become medical orders immediately but can be changed or updated at any time.

Many critically ill patients are too sick or impaired neurologically to participate in their own health care decisions, particularly in the complex decisions about life-sustaining therapies. When a patient loses capacity to make medical decisions, their right to informed consent for a treatment is extended to the surrogate decision–maker, who was either previously designated by the patient or is identified by applicable local laws. Wherever they practice, clinicians should be familiar with the applicable local regulations on how surrogate decision-makers are determined when patients have not previously designated someone as their surrogate decision-maker.

Surrogates experience significant distress, anxiety, and guilt in having to be involved in medical decision-making in the ICU and clinicians need to be prepared to give surrogates guidance on the ethical standards for surrogate decision-making.^16,17 When a patient has completed a living will requesting or refusing specific types of care in specific medical situations, even if local laws do not make these requests legally binding, surrogates are expected to make decisions for the patient concordant with the patient’s previously expressed wishes. When there is no evidence of the patient’s prior wishes, surrogates are expected to make decisions for the patient based on what the patient would have wanted under the circumstances of the illness (ie, substituted judgment standard) by using what they know of the patient’s philosophical, religious, and moral beliefs and values. When the surrogate does not have any way of knowing what the patient would have wanted or the patient has never had the capacity to make medical decisions, surrogates are then encouraged to make medical decisions in the patient’s best interest, where they weight the risks and benefits of the treatment to the patient (ie, best interest standard).⁴

Some critically ill patients who lack decision-making capacity do not have a surrogate decision-maker or an advanced directive.¹⁸ In such cases, clinicians have an ethical responsibility to act in the patient’s best interest, given their understanding of the patient’s medical conditions and prognosis. Since there is a great variation in hospital policies and local laws regarding the decision-making process for these patients, clinicians need to be aware of their hospital policies regarding such cases and consider involving ethics consultation to help with complex cases.

Critical care guidelines endorse a shared decision-making model in which the patient, if able, and/or the family play an active role in the decision-making in the ICU.¹⁹ Shared decision-making is based on a relationship of mutual respect between the clinical team, who are considered the experts on prognosis and treatment options, and the patient/family, who are experts on the patient’s values. The goal in medical decision-making is to reach a consensus regarding the value-laden treatments by discussing the nature of the decision, exchanging the relevant information, and discussing how each party prefers to make decisions. The clinical team shares the burden of the decision-making by being available to help clarify the patient’s values and the impact of each option on the patient’s goals and interests.²⁰ Patients and families vary widely in how they prefer to make the value-laden decisions in the ICU, ranging from a preference for complete control of the decision to deference to the clinicians’ judgment. The shared decision-making model empowers clinicians to become skillful and flexible communicators who can disclose information, explore expectations, use narrative skills to make sense of complex medical situations, build relationships by explicitly providing emotional support, explore role preferences, and discuss concerns and conflicts openly.²¹

With the rise of patients’ rights movement, researchers conducted the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a large multicenter clinical trial that sought to better understand how seriously ill patients were treated in U.S. hospitals. The study found that physicians were not asking seriously ill hospitalized patients about their preferences regarding life-sustaining treatments near the end of life, that a significant percentage of the patients who died spent 10 or more days in the ICU before death, and that the family members remembered significant symptoms, including severe pain in the dying patients.²² The results of the SUPPORT study generated a robust national discussion in the United States about the inadequacies of end-of-life care in hospitals and, together with the increased polarization around the issue of physician-assisted suicide, helped to catalyze the palliative care movement in the United States.⁸

Palliative care is an approach to care that grew out of a long tradition of hospice care, which provided intensive treatments aimed at relieving suffering in dying patients. Initially, palliative care was seen as a sequel to failed intensive care, and its role was restricted to patients who were actively dying. Over time, ICU clinicians have come to understand that it is difficult to predict survival in the ICU, and that survivors of critical illness often develop profound physical and psychological symptoms and functional and cognitive impairments.³ Thus, clinicians have come to appreciate that both critically ill patients and survivors of critical illness may benefit from a multidisciplinary, patient-centered approach to care that aims at assessing and treating multiple sources of suffering.³

ICUs are increasingly integrating the principles of palliative care into the comprehensive care for all of their patients in an effort to increase the overall quality of care.²³ ICU palliative care focuses on the following principles: assessing and treating the patient’s symptoms in the ICU; providing psychological and spiritual support to the patient and their families; facilitating proactive and compassionate communication between the clinical providers and the patient and their families so that treatments are better aligned with the patient’s values and interests; planning transition; and support for both patient and family throughout the illness trajectory.²⁴ The hope is that by integrating palliative care principles into the care of all critically ill patients, the ICU environment will be better suited to support all patients with a high probability of death or impaired recovery.

Over the past decade, there has been a steady increase in the availability of palliative medicine specialists in acute care hospitals in the United States and the trend is seen in other countries as well.²⁵ Depending on the culture of the institution, some core elements of ICU palliative care can be provided as part of the routine care by members of the ICU team. In addition, a clinician champion in palliative care or use of protocols or order sets can also improve clinical practice in this area. For example, when ICU clinicians conduct routine, proactive meetings within 72 hours of the ICU admission with families of patients at high risk of death, patients spend less time in the ICU without any change in hospital mortality. The reduced length of stay has been attributed to the families and the clinicians reaching a consensus more quickly regarding the plan of care for the patient.²⁶ Other elements of the ICU palliative care may require consultation from a palliative care specialist (eg, refractory symptom management, conflict resolution regarding goals of treatment, providing support to a family with difficult family dynamics). Specialty palliative care consultation in the ICU has been associated with reduced length of stay, earlier identification of patients who are on a dying trajectory, and more transfer of dying patients to lower intensity care sites when appropriate.^27,28

Patients or their surrogates may request treatments in the ICU that the clinicians feel are futile. The root of the word futility (from the Latin futilis for leaky, vain, or worthless) suggests a very narrow definition in which a futile intervention literally cannot achieve its goals.²⁹ The concept of futility can be considered in two different ways. The notion of quantitative futility refers to an intervention with a small probability of achieving its physiologic purpose (eg, an intervention might be called futile if it has not worked in the past 100 cases). Clinicians also use futility in a more qualitative sense when the treatment in question is being used to achieve goals that the clinician thinks are inappropriate (eg, prolonging an inevitable death or prolonging a minimally conscious state).²⁹

The principle of autonomy should not be interpreted to mean that the patient has the right to every requested medical intervention. However, when families or patients request a potentially futile treatment, clinicians should ask themselves what (or whose) goal is the intervention futile to achieve and be careful not to conflate their medical judgments with their value judgments. Clinicians are not ethically obligated to offer or provide treatments that they do not believe will achieve the patient’s goals; however, sometimes a clinician’s initial sense of what constitutes a benefit to the patient may be broadened by a culturally sensitive, empathic exploration of the patient’s values. In the ICU, since the care is interdisciplinary, it is especially important for clinicians to seek consensus among the clinical team members about the appropriateness of a particular treatment approach.

Futility conflicts are often about fundamental differences in values about what makes a life worth living and/or what are the appropriate goals of modern medicine. Other contributory causes of these conflicts may include a misunderstanding of medical facts, including prognosis and the goals of treatment; surrogates’ emotional stress; conflicts of interest on the part of the patient/family or clinical team; and intrateam or intrafamily conflict.³⁰ In most cases, a process-oriented approach to these conflicts that focuses on the best communication practices opens up the possibility for consensus.³¹

When conflicts arise in the ICU over medical decisions, an ethics consultant may be helpful in facilitating an ethically justifiable plan that best integrates the values, perspectives, and interests of the relevant stakeholders. In several studies, proactive ethics consultation in the ICU was associated with fewer days in the ICU and more decisions to forgo life-sustaining treatments without any increase in mortality.³² Ethics consultants may also be helpful in developing and implementing hospital policies that allow for a “due process” approach to resolving futility conflicts.

Many patients who died in the ICU would have done so in the face of some limitation (withdrawal or withholding) of life-sustaining treatment, although there is a wide variability in this practice across the United State and in other countries.^2,33 ICU clinicians need to be highly skilled and knowledgeable in this aspect of ICU care. Secular ethical principles do not distinguish between withholding (ie, refraining from starting) and withdrawal (ie, stopping a treatment that is already underway) of life-sustaining treatments. In practice, for clinicians and surrogates, stopping a treatment already in place often feels emotionally different from not starting a treatment. However, when there is a significant uncertainty about prognosis, not starting a treatment may be more difficult and may leave the family with unresolved questions about whether the treatment could have benefitted the patient. The time-limited trial of a particular treatment may be especially useful when the prognosis is uncertain, allowing the clinicians and families to directly assess the benefits of a particular treatment with the recognition that the treatment may be stopped if it does not achieve the patient’s goals.²³

The goal of withdrawing life-sustaining treatment is usually to remove treatments that are no longer wanted or are only serving to prolong the suffering or dying process of the patient.^23,34 In general, guidelines suggest that once a decision has been made to withdraw one life-sustaining treatment (eg, renal replacement therapy or vasopressors), clinicians should carefully consider the utility of other forms of life-sustaining treatment. Clinicians should document the meetings leading up to the decision in the medical record. Interdisciplinary teams should aim for consensus among the team members with direct patient care about how the life-sustaining treatments will be withdrawn. Because the withdrawal of mechanical ventilation has the greatest potential for patient discomfort, some clinicians prefer to remove other life-sustaining treatments (eg, vasopressors, pacemakers, intra-aortic balloon pumps) prior to removing the mechanical ventilator in dying patients, with the hope that death will occur while the patient is on the ventilator.³⁵

The withdrawal of life-sustaining treatments is a clinical procedure like any other that is performed in the ICU and it requires expertise, careful preparation, appropriate documentation, and ongoing evaluation.^23,36 The ICU room should be transformed from one equipped to rescue to one more conducive to comfort, dignity, and quiet. Most families will not know what to expect during the process of withdrawal so key information should be provided to alleviate fears, worries, and concerns. Clinicians should be prepared to discuss prognosis and time to death after the withdrawal of a particular treatment. Estimates based on the clinical situation of the patient can sometimes be helpful to families who need more guidance so that they can make arrangements. The possibility of transfer out of the ICU is best discussed openly with families before it is initiated. Spiritual or emotional support should be offered and provided to the patient or family when appropriate.

The mechanical ventilator is the most common treatment that is withdrawn in the anticipation of death in the ICU.³⁷ There is no optimal strategy for removing the mechanical ventilator from the patient and there is considerable variation in practice. Some clinicians prefer to withdraw the mechanical ventilator and the endotracheal tube in one step, whereas others prefer to maintain the artificial airway to facilitate suctioning and prevent airway obstruction. Effective sedation and analgesia are crucial both before the ventilator is removed and afterwards. Some key steps to this process include ensuring that the patient is comfortable before initiating the withdrawal of the mechanical ventilator, assessing the likelihood of imminent death after the withdrawal of the ventilator, and being prepared with bedside medication for analgesia and sedation as appropriate for the clinical scenario.³⁸ Monitors should probably be turned off and, after the ventilator or endotracheal tube is removed, oral suctioning and intensive symptom management should be initiated. Neuromuscular blocking agents have no role in withdrawal of the mechanical ventilator or any other life-sustaining treatments.²³ Although patients may “look” comfortable during the process of withdrawal with the use of these medications, these drugs preclude any assessment of symptoms and do not have any analgesic or sedative properties. Therefore, their use cannot be justified as part of a comfort-oriented approach. ICU clinicians should become comfortable with the assessment and treatment of end-of-life symptoms (eg, pain, dyspnea, delirium, dry mouth) in patients who cannot self-report, so that the withdrawal of the mechanical ventilator is as comfortable for the patient and the families as possible.³⁹