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Recommendations for end-of-life care in the : A consensus statement by the American College of Critical Care

Robert D. Truog, MD, MA; Margaret L. Campbell, PhD, RN, FAAN; J. Randall Curtis, MD, MPH; Curtis E. Haas, PharmD, FCCP; John M. Luce, MD; Gordon D. Rubenfeld, MD, MSc; Cynda Hylton Rushton, PhD, RN, FAAN; David C. Kaufman, MD

Background: These recommendations have been developed to to die, and between consequences that are intended vs. those that improve the care of intensive care unit (ICU) during the are merely foreseen (the doctrine of double effect). Improved dying process. The recommendations build on those published in communication with the family has been shown to improve pa- 2003 and highlight recent developments in the field from a U.S. tient care and family outcomes. Other knowledge unique to end- perspective. They do not use an evidence grading system because of-life care includes principles for notifying families of a ’s most of the recommendations are based on ethical and legal and compassionate approaches to discussing options for principles that are not derived from empirically based evidence. . End-of-life care continues even after the death of Principal Findings: Family-centered care, which emphasizes the patient, and ICUs should consider developing comprehensive the importance of the social structure within which patients are bereavement programs to support both families and the needs of embedded, has emerged as a comprehensive ideal for managing the clinical staff. Finally, a comprehensive agenda for improving end-of-life care in the ICU. ICU clinicians should be competent in end-of-life care in the ICU has been developed to guide research, all aspects of this care, including the practical and ethical aspects quality improvement efforts, and educational curricula. of withdrawing different modalities of life-sustaining treatment Conclusions: End-of-life care is emerging as a comprehensive and the use of , , and nonpharmacologic area of expertise in the ICU and demands the same high level of approaches to easing the of the dying process. Several knowledge and competence as all other areas of ICU practice. key ethical concepts play a foundational role in guiding end-of- (Crit Care Med 2008; 36:953–963) life care, including the distinctions between withholding and KEY WORDS: ethics; intensive care unit; end-of-life; palliative withdrawing treatments, between actions of killing and allowing care; decision making; quality improvement

he primary goals of intensive admitted to an intensive care unit (ICU) Admission to the ICU is therefore of- care medicine are to help pa- surviving to discharge (1). Even so, the ten a therapeutic trial. Only when the tients survive acute threats to ICU has become a common place to die; trial fails do patients and families con- their lives while preserving studies show that 22% of all in the sider a change in goals, from restorative Tand restoring the quality of those lives. now occur in or after ad- care to . This change, which These goals are frequently achieved, with mission to an ICU (2). has been called the transition from cure approximately 75% to 90% of patients to comfort, is one of the most difficult and important aspects of medical and practice in the ICU (3). Two From Harvard and Children’s Hos- care medicine, is the consultative body of the Society truths ensure that this transition will re- pital, Boston, MA (RDT); Detroit Medical Center and of Critical Care Medicine (SCCM), which possesses main difficult, despite our best efforts. Center for Palliative Care Excellence, Wayne State recognized expertise in the practice of critical care. “First is the widespread and deeply held University, Detroit, MI (MLC); University of Washington, The ACCM has developed administrative guidelines desire not to be dead. Second is medi- Seattle, WA (JRC); Department of , Strong and clinical practice parameters for the critical care Health, and Department of , School of Medicine practitioner. New guidelines and practice parameters cine’s inability to predict the future, and and , University of Rochester, Rochester, NY are continually developed, and current ones are sys- to give patients a precise, reliable (CEH); University of California, San Francisco, CA tematically reviewed and revised. about when death will come. If death is the (JML); Division of Pulmonary and Critical Care Medi- Dr. Rubenfeld has held a consultancy with VERICC. alternative, many patients who have only a cine, Harborview Medical Center, University of Wash- The remaining authors have not disclosed any poten- ington, Seattle, WA (GDR); Harriet Lane Compassionate tial conflicts of interest. small amount of hope will pay a high price Care and Berman Institute, Johns Hopkins For information regarding this article, E-mail: to continue the struggle” (4). University and Children’s Center, Baltimore, MD (CHR); [email protected] The purpose of these recommenda- and University of Rochester, Rochester, NY (DCK). Copyright © 2008 by the Society of Critical Care tions is to improve the care of patients The American College of Critical Care Medicine Medicine and Lippincott Williams & Wilkins during this transition and through the (ACCM), which honors individuals for their achieve- DOI: 10.1097/CCM.0B013E3181659096 ments and contributions to multidisciplinary critical dying process. These recommendations

Crit Care Med 2008 Vol. 36, No. 3 953 build on those published in 2001 (5) and or the “best interests standard” (if they are severe. Furthermore, the attempts may be highlight recent developments in the not). While these decisions are often inappropriate when the patients’ wishes are field from a U.S. perspective. The recom- reached by consensus with the patient known, death is imminent, or discontinu- mendations do not quantitatively grade and family, patients do have an opportu- ing drugs would cause significant and the level of evidence because most of the nity to designate a specific individual as a suffering. In these situations, surrogates recommendations are based on ethical healthcare proxy. When no individual has should be entrusted to make decisions for and legal principles that are not derived been specifically designated, many states the patient (10). from empirically based evidence. define a legal hierarchy for choosing a Patients and families must be given suf- designated surrogate (1). Table 1 provides ficient time to reach decisions at the end of Patient and Family-Centered some of the legal precedents for these life, and information should be delivered in Care and Decision Making principles in American law. ways that are sensitive to the patient’s cul- Legal guidelines regarding end-of-life tural, religious, and language needs. Physi- Family-centered care, which sees pa- decision making are less clear when pa- cians should take seriously their responsi- tients as embedded within a social struc- tients without capacity lack an appropri- bility to make recommendations and guide ture and web of relationships, is emerging ate surrogate. Some states allow physi- families in ways that accord with their de- as a comprehensive ideal for end-of-life care cians to make decisions for such patients cision-making preferences. Merely provid- in the ICU (6, 7). This approach has impor- based on wishes expressed to the physi- ing treatment alternatives and asking pa- tant implications for decision making and cians when the patients had capacity. tients and families to choose among them communication. However, no state explicitly allows physi- may make the patients and families feel Standards for Decision Making. In the cians to make decisions based on their solely responsible for the decision to forgo United States and many other countries, view of the best interests of the patient life-sustaining treatment, and this practice limiting is ethically and le- (1). In general, we recommend against ad contrasts with the preferred practice of gally justified under the principle of au- hoc decision making in these circum- shared decision making (11). Some pa- tonomy. U.S. law grants patients with de- stances. One option is to ask the court to tients and families prefer to have cision-making capacity the right to refuse appoint a guardian for the patient. An- make these decisions (12). Asking patients any and all , including those that other option is to develop a clear proce- and families how they prefer to make deci- sustain life (1). This standard is problematic dural guideline, including safeguards to sions is an important aspect of treating in the ICU, however, where as many as 95% protect the patient’s interests (such as them with respect (13). of patients may not be able to make deci- mandatory ethics committee review) (9). Resolving Conflict. End-of-life deci- sions for themselves because of either their In an effort to engage the patient di- sions are made readily and by consensus illness or (8). rectly in decision making, there may be when communication among patients, When patients cannot make decisions times when sedatives and analgesics could their surrogates, and clinicians is satis- for themselves, decisions are made on their be discontinued so that a patient may re- factory. Nevertheless, communication behalf by surrogates, using either the “sub- gain decisional capacity. Nevertheless, such may not resolve all differences, especially stituted judgment standard” (if the pa- attempts may not result in a return to lu- when patients or families insist on inter- tient’s values and preferences are known) cidity because the patients’ illness is too ventions that clinicians consider inadvis- able. In cases of conflict, the first step is for all parties to focus on obtaining clar- Table 1. Important U.S. court cases addressing decision making at the end of life ity about the goals of care. Patients or their surrogates should determine what Case Importance they hope to achieve—for example, re- storing health, extending life, or relieving Schloendorff v. Society of New York , Established that competent patients have a right to pain and suffering. For their part, physi- 211 N.Y. 125, 105 N.E. 92 (1914) determine how their bodies can be used and that cians should provide information about informed consent is required before therapeutic interventions can be performed. the patient’s prognosis and what goals In re Quinlan, 755 A2A 647 (H.J.), cert. Declared that competent patients have a right to can be accomplished by the use of specific Denied, 429 U.S. 922 (1976) refuse interventions that, if they become interventions (14). incompetent, can be exercised by surrogates In the small number of cases where under the principle of substituted judgment. agreement is not possible, physicians are Barber v. Superior Court, 147 Cal. App. Clarified that surrogates can refuse any and all not obligated to offer therapies that they 7d 1006 (Cal. App. 1983) interventions on behalf of patients, based on a believe cannot achieve the goals of care, benefit-burden analysis. In re Conroy, 486A 2d 1209 (N.J., 1985) Established that, lacking surrogate knowledge of as mutually defined by the clinicians, pa- patient wishes, decisions can be made using a tient, and surrogates (15, 16). When this best interests standard if the burdens of occurs, the American Medical Association interventions outweigh their benefits and if the (17) and others have recommended a pro- pain of living is such that administering the cess-based approach to resolving conflicts interventions is inhumane. over end-of-life issues. Central to this Cruzan v. Director, Missouri Department of Accepted the right of competent patients to refuse process is mediation by ethics Health, 497 U.S. 261 (1990) interventions but allowed states to set the level committees. Many hospitals have adopted of evidence required to determine the prior policies based on this model, and at least wishes of incompetent patients with which surrogate decisions are made. one state has incorporated this approach into legislation (18).

954 Crit Care Med 2008 Vol. 36, No. 3 Communication With Families. Car- ity when clinicians spend more time dur- should possess fundamental skills in spir- ing for family members is an important ing family conferences listening to fami- itual assessment and referral (32). part of caring for the critically ill patient. lies, value the family input, and support Family-centered care is based on the val- their emotions (22, 24, 26). Families also Ethical Principles Relating to the ues, goals, and needs of the patient and need ongoing and direct communication Withdrawal of Life-Sustaining family, including their understanding of concerning the patient’s prognosis (27, Treatment the illness, prognosis, and treatment op- 28). A recent randomized trial showed tions and their expectations and prefer- that such strategies to improve commu- Three ethical principles help to shape ences for treatment and decision making nication with families can significantly the current U.S. consensus around the (6). Supporting families through the reduce psychological morbidity in family withdrawal of life-sustaining treatment. death of a loved one in the ICU frequently members after the ICU stay (22). Other While not all clinicians personally agree involves guiding them through “hoping strategies for improving end-of-life com- with each of them, these principles have for the best and planning for the worst” munication are shown in Table 2. broad-based support within the U.S. legal (14). Compassion requires honoring the In addition, some families may choose system and accepted clinical practice and family’s hopes and simultaneously pre- to be present during and thereby form the basis for the specific paring them for the possibility of death other invasive procedures (29). Research recommendations that follow (33). The (19). Framing discussions in these terms shows that these experiences may be three principles are as follows: 1) With- can help avoid and resolve conflicts as the highly valued by family members and holding and withdrawing life support are patient’s condition unfolds. need not interfere with the delivery of equivalent; 2) there is an important dis- Communication between members of medical care. Allowing family members tinction between killing and allowing to the ICU team and the family occurs in die; and 3) the doctrine of “double effect” to be present for such procedures re- many settings, including the formal fam- provides an ethical rationale for provid- quires careful planning, including guide- ily conference as well as bedside commu- ing relief of pain and other symptoms lines, the availability of support systems, nication. Communication skills are an with sedatives even when this may have and trained personnel (30). important component of high-quality the foreseen (but not intended) conse- Spirituality plays an important role in critical care, and there is increasing evi- quence of hastening death (34–37). how some critically ill patients and clini- dence regarding the importance of this Withholding vs. Withdrawing. Numer- skill for family outcomes (20–23). There cians cope with illness and death (31). ous surveys consistently show that clini- is also increasing evidence supporting Spirituality is not synonymous with reli- cians are psychologically more comfortable specific approaches that can improve gion. Each person’s understanding of withholding treatments than withdrawing communication and family experiences spirituality should be explored. Assess- them (38–40). The reasons for this are (22, 24, 25). Evidence shows that families ment of spiritual needs is not the exclu- complex but relate to the fact that with- are more satisfied with communication sive domain of the chaplain but is part of holding is passive, whereas withdrawing is and have reduced psychological morbid- the role of critical care clinicians, who active and associated with a greater sense of moral responsibility. Despite this psycho- logical preference, both philosophical and Table 2. Strategies for improving end-of-life communication in the intensive care unit (ICU) legal analyses have emphasized that clini- cians should make no distinction between 1. Communication skills training for clinicians decisions to withhold or to withdraw (41). 2. ICU family conference early in ICU course (118) This is because whether any is ini- Evidence-based recommendations for conducting family conference: tiated or continued should be based solely Find a private location (21). Increase proportion of time spent listening to family (26). on an assessment of its benefits vs. burdens Use “VALUE” mnemonic during family conferences (22). and the preferences of the patient. Further- Value statements made by family members. more, in many cases the value of an inter- Acknowledge emotions. vention can only be determined after a trial Listen to family members. Understand who the patient is as a person. of therapy. If clinicians are reluctant to Elicit questions from family members. withdraw therapies, they may be less in- Identify commonly missed opportunities (25, 149). clined to give patients a trial of an indicated Listen and respond to family members. therapy and thereby may make premature Acknowledge and address family emotions. decisions to withhold therapies that the pa- Explore and focus on patient values and treatment preferences. Affirm nonabandonment of patient and family. tient would consider beneficial. Assure family that the patient will not suffer (24). Killing vs. Allowing to Die. In the Provide explicit support for decisions made by the family (24). landmark case of Karen Ann Quinlan, Additional expert opinion recommendations for conducting family conference: physicians argued that withdrawal of me- Advance planning for the discussion among the clinical team chanical ventilation from a patient was Identify family and clinician participants who should be involved. unethical, because it would kill the pa- Focus on the goals and values of the patient. Use an open, flexible process. tient. Some philosophers have supported Anticipate possible issues and outcomes of the discussion. this view, arguing that since killing is Give families support and time. defined as an act that is the proximate 3. Interdisciplinary team rounds cause of a death, then withdrawal of life 4. Availability of palliative care and/or ethics consultation (115, 116) 5. Development of a supportive ICU culture for ethical practice and communication (108) support is indeed an act of killing, but one that may be justified by the clinical

Crit Care Med 2008 Vol. 36, No. 3 955 circumstances and the consent of the pa- Some have argued that the doctrine of curtains separate patient beds. When the tient or surrogate (33). The U.S. courts, double effect is not necessary, since stud- dying process is prolonged or when de- however, have rejected this view. In ies suggest that the use of sedatives and mands for an ICU bed cannot be met in Quinlan, for example, the court affirmed analgesics at the end of life does not ac- other ways, transfer to another area in the that patients or their surrogates have the tually hasten death (44–46). The doc- hospital may be unavoidable (50). The tran- right to refuse any unwanted medical trine is still useful, however, for justifying sition should occur smoothly with defer- treatment, even if life-sustaining. There- those individual cases where the drugs ence to the needs of the patient and family. fore, the withdrawal of life-sustaining treat- clearly appear to hasten death but are Every effort should be taken to reassure ments is not legally considered a killing, necessary to control symptoms (47). family members that continuity of clinical and the actions of clinicians in this regard care will be maintained. are described as “allowing the patient to Practical Aspects of Even though excellent palliative care die” from the underlying illness (42). Withdrawing Life-Sustaining can often be provided with no more than Intended vs. Merely Foreseen Conse- Treatments in the ICU attentive and compassionate clinical as- quences. is illegal in the sessment, there may be a tendency to United States, yet ICU clinicians have an Practical advice around the withdrawal continue cardiac, oximetry, and obligation to make patients comfortable of life-sustaining treatments comes from a even invasive hemodynamic during the dying process, even when med- combination of theoretical considerations, in the ICU. Since such monitoring does ications must be administered in doses that empirical data, and clinical experience. Al- not provide additional comfort to the pa- may shorten the patient’s life. The philo- though the phrase “withdrawal of care” is tient and is not necessary to assess symp- sophical doctrine of “double effect” is used often heard, it is important to distinguish toms of distress, providers should criti- to draw a moral distinction between giving between the withdrawal of life-sustaining cally review whether it should be medications with the intention to kill the interventions and the withdrawal of care. continued. Family members, particularly patient vs. giving them with the intention While the former is common, the latter those who have spent weeks tracking to make the patient comfortable, but with should never occur. Language is important, physiologic markers, may find them- the foreseen consequence of potentially particularly to patients and their families. selves paying undue attention to the hastening the patient’s death. The Procedure of Withdrawing Life- monitor instead of the patient. A specific This doctrine is controversial, since it Sustaining Treatment. A useful clinical conversation with the family about the relies on an assessment of the intentions framework for the withdrawal of life- rationale for stopping these forms of of the clinician, which are subjective and sustaining treatment is to consider it as monitoring may relieve . can be mixed. Furthermore, in most sit- one of many critical care procedures. Cli- Considerations Around Specific Ther- uations individuals are morally responsi- nicians should follow steps familiar to apies. Once the transition from cure to ble for all of the foreseen consequences of those from other procedures like tracheal comfort has been negotiated, all ICU their actions, not just those that are in- intubation or central venous catheteriza- therapies should be critically evaluated in tended (34, 36). Despite these philosoph- tion (48). Communication with the fam- terms of whether they make a net positive ical difficulties, the principle is supported ily and preparing them for the withdrawal contribution to the comfort of the pa- in the U.S. law and defines the line be- process is an essential step. In particular, tient. This includes , vasoactive tween euthanasia and acceptable pallia- families should be prepared for the nor- drugs, renal , and ventricular as- tive care. In the words of former U.S. mal respiratory patterns that often pre- sist devices. These treatments, including Supreme Court Chief Justice Rehnquist, cede death. Clinicians should avoid refer- intravenous fluids and nutrition, do not “It is widely recognized that the provision ring to these as “agonal respirations,” provide comfort to dying patients and are of pain medication is ethically and pro- since this term may erroneously imply to not obligatory during the withdrawal of fessionally acceptable even when the the family that these cause the patient to life support. Sometimes clinicians set lim- treatment may hasten the patient’s death be in “agony.” With appropriate palliative its on treatments that are not currently if the medication is intended to alleviate care, this breathing pattern is a natural indicated (such as cardiopulmonary resus- pain and severe discomfort, not to cause part of dying and should not be associated citation) while continuing other forms of death” (43). with any discomfort. aggressive treatment. However, once the The intentions of the clinicians are As with other routine clinical proce- decision has been made to withhold a life- therefore critically important in deter- dures, an explicit plan of withdrawing life sustaining therapy (such as renal dialysis or mining the legality of the large doses of support helps ensure that nothing is vasopressors), clinicians should critically medication that are sometimes adminis- overlooked, such as discontinuing rou- consider the rationale for continuing any tered in end-of-life care. Both in verbal tine treatments that provide no comfort other life-sustaining treatments (51, 52). communication and written documenta- to the patient (such as chest radiographs There are justifications for offering tion, clinicians must clearly express the and blood draws). An explicit plan also limited sets of life-sustaining treatments. intention to relieve the pain and suffering prompts busy clinicians to make impor- The most compelling is when a patient of the patient and the clinical signs that tant contacts, such as with - has specifically refused one form of life- justify the administration of additional ers, clergy, and organ donation coordina- sustaining treatment on the basis of per- medications. Moreover, this intention is tors (49). sonal values, as for example when a pa- evidenced by practices that rely on an Clinicians should be prepared to assist tient refuses intubation while requesting ongoing assessment of the patient’s com- families in the dying process. The goal is other therapies. These wishes should be fort, coupled with judicious titration of to provide the patient and family a quiet, followed as long as they are consistent sedation and analgesia in accordance private space devoid of technology and with good-quality care. However, prefer- with clinical guidelines alarms. This may be difficult in units where ences such as refusing endotracheal in-

956 Crit Care Med 2008 Vol. 36, No. 3 tubation while insisting on other aspects clinicians may initiate use of these agents among ICU patients (60). When patients of cardiopulmonary resuscitation are not at the time of withdrawal of life support. cannot self-report their symptoms, clini- consistent with good-quality care and This practice, whose primary purpose is cians may undertreat pain and suffering should not be adopted as a plan of treat- to make the patient “look” comfortable because of difficulty in identifying behav- ment. during the dying process, is not accept- ioral indicators of these symptoms (61). Abrupt discontinuation of life-sustain- able. Since these agents have no Pain. More than 50% of seriously ill ing treatments, with the exception of me- or effects, their use cannot be hospitalized patients report some level of chanical ventilation, results in no discom- justified as being beneficial to the patient. pain (62). Pain in the ICU is often related fort. Therefore, there is no justification to Furthermore, their use makes it impos- to iatrogenic causes, procedures, and in- wean treatments such as antibiotics, blood sible to assess the patient’s level of com- terventions. Moderately or severely un- products, intravenous fluids, or cardiovas- fort, thereby thwarting an essential goal comfortable procedures that are com- cular support. Since rapid withdrawal of of end-of-life care. A second, more diffi- monly performed in the ICU include oxygen or ventilatory support may lead to cult situation occurs when a decision is suctioning, turning, insertion, dyspnea, there is a theoretical rationale for made to withdraw life support from a wound care, and the presence of endotra- removing these supports gradually. Al- patient who has been receiving paralytic cheal tubes (63, 64). Minimizing or elim- though a prolonged “terminal weaning” agents for therapeutic reasons. The ideal inating iatrogenic sources of pain should process has been advocated on the grounds solution in this circumstance is to allow be part of the pain relief plan. that it removes a sense of responsibility the paralytic agent to wear off or to phar- When patients cannot self-report their from the family and clinicians, this process macologically reverse its effects, allowing degree of pain, standardized scoring sys- is not ethically required and may, by pro- for better assessment of the patient. In tems based on physiologic variables and longing the dying process, actually contrib- some cases, however, the duration of ac- behavioral observations can provide an ute to patient distress (53). Therefore, the tion of these agents may be very pro- objective basis for . The only justification for gradual reduction of longed, as when the patient has been re- Behavioral Pain Scale was developed for ventilatory support is to allow time to con- ceiving large doses of the drugs or when use in the ICU with mechanically venti- trol dyspnea through the titration of med- hepatic or renal failure has impaired their lated patients (65). The Behavioral Pain ications. clearance. In these cases, the benefits of Scale has strong interrater reliability, Considerable variation in practice at- continuing with life support until neuro- moderate internal consistency, and dis- tends to the decision of whether to extu- muscular function can be restored must be criminant validity (66, 67). bate patients when withdrawing mechan- balanced against the burdens that this sup- The Pain Assessment Behavior Scale is ical ventilation or whether to leave the port imposes on the patient and family. another simple, reliable, and valid instru- endotracheal tube in place while the ven- The question of how to manage pa- ment for assessing pain in adults when a tilator is weaned (54). Since survivors of tients receiving paralytic agents remains self-report cannot be obtained. This in- critical illness frequently recall endotra- controversial. If prolonged paralysis is strument has strong internal consistency cheal tubes and suctioning as significant recognized as an iatrogenic complication and interrater reliability, and the corre- sources of discomfort, an argument can of the patient’s treatment, then insisting lation between patient reports and Pain be made to remove artificial airways (55). that this complication be resolved before Assessment Behavior Scale suggests that Neither ethical principles nor current acceding to the families request to with- this scale is a good measure of pain pres- empirical evidence can support a dog- draw life support could be seen as placing ence and intensity (68). matic view on this question; clinicians the concerns of the care team above those Dyspnea and Respiratory Distress. should solicit input from team members of the patient and family. These recom- Dyspnea and respiratory distress are com- and the family to make the decision in mendations therefore take the following mon symptoms among patients admitted individual cases. positions. First, paralytic agents should to an ICU unit for oxygen and ventilatory The use of noninvasive ventilation never be introduced at the time of with- support (69). Dyspnea is defined as the during end-of-life care should be evalu- drawal of life support. Second, when pa- patient’s subjective awareness of altered ated by carefully considering the goals of tients have been receiving paralytic or uncomfortable respiratory functioning; care (56–58). There are two reasonable agents for therapeutic reasons, neuro- respiratory distress is the observable corol- scenarios. A patient who has specifically muscular function should ideally be re- lary to dyspnea (70). Behavioral correlates refused intubation but desires other as- stored before withdrawal of life support. of respiratory distress in mechanically ven- pects of intensive care with the goal of Third, when restoring neurologic func- tilated patients include (in descending fre- prolonging survival may choose noninva- tion would impose an unacceptable delay quency) tachypnea and tachycardia, a fear- sive ventilation. Alternatively, noninva- on the withdrawal of life support, with- ful facial expression, accessory muscle use, sive ventilation may be used as a pallia- drawal may proceed, with particular at- paradoxic breathing (diaphragmatic), and tive technique to minimize dyspnea. tention given to ensuring the comfort of nasal flaring (71). When used for the latter indication, non- the patient through the dying process, The data to support specific treatment invasive ventilation should be stopped recognizing that signs of discomfort will approaches for dyspnea during end-of-life when it is no longer effective at relieving be difficult to detect. care are sparse and incomplete. The best that symptom. approach is to individualize the treat- Pharmacologic Paralysis and End-of- Symptom Management in ment based on the underlying source of Life Care. Neuromuscular blocking End-of-Life Care the dyspnea, the patient’s level of con- agents, such as pancuronium, vecuro- sciousness, and the patient’s observed nium, and atracurium, can be involved in Declining or impaired cognition and and perceived needs. Some approaches end-of-life care in two ways (5, 59). First, decreased consciousness are common treat the symptom directly and thereby

Crit Care Med 2008 Vol. 36, No. 3 957 prolong life. These include, for example, staff presence are all strategies that may ment of dyspnea in some patients by re- supplemental oxygen, corticosteroids, di- reduce the negative effects of and ducing . uretics, and bronchodilators. Other ap- minimize the need for sedation (76). Neu- is recommended as the agent proaches, like administration of , roleptic agents, such as , are ef- of choice for palliative care due to its effi- also make the patient comfortable but fective at reducing delirium-induced agita- cacy, low cost, familiarity to the healthcare may decrease consciousness. Clinicians tion. While sedation is the hallmark team, and potentially beneficial euphoric should work with patients and families to treatment for agitated delirium and is often effects. Compared with other opioids, mor- determine the optimal approach, or com- necessary at the end of life (10), its use phine is associated with a greater risk of bination of approaches, for each patient deprives the patient and family of possible histamine release causing urticaria at the on an individual basis (70). meaningful interactions before death and injection site, pruritus, and flushing, which Delirium. Delirium is a disturbance of should be used as a last resort. may be relieved by antihistaminic therapy consciousness characterized by an acute Specific Medications. The goal of drug (83). and hydromorphone are al- onset and fluctuating course such that a therapy as a component of end-of-life care ternatives to morphine. Fentanyl has a very patient’s ability to receive, process, store, is the alleviation or prevention of pain, dys- short duration of response and should be or recall information is impaired (72). pnea, and other distressing symptoms. The administered by continuous infusion in When these symptoms are accompanied medications most commonly used in end- this setting. Although hydromorphone is by increased motor activity, the condition of-life care are summarized in Tables 3 and considered to have less euphoric effect than is termed agitated delirium. Agitated de- 4. As a general rule, any time an increase in morphine, available evidence does not sug- lirium is relatively common in ICU pa- an infusion dose is being considered due to gest important differences in analgesic effi- tients as a consequence of their medical reemergence of the signs or symptoms of cacy, adverse effects, or patient preference condition, substance intoxication or suffering, intravenous bolus doses should in the management of chronic and acute withdrawal, use of medication, or a com- be administered concurrently to achieve a pain (84). bination of these factors (60, 73), and it rapid response. The routine use of a bolus- Benzodiazepines are the most fre- prompts the use of sedatives and re- infusion approach should minimize the quently used and often preferred agents straints to promote and risk of unnecessary delays in response. for sedation in the critical care unit, in- avoid self-harm. Delirium, calm or agi- Opioids are the mainstay for the treat- cluding sedation during end-of-life care tated, is a common symptom among con- ment of pain and dyspnea in dying pa- (44, 77, 82, 85). They have no analgesic scious ICU patients who are dying (74). tients and demonstrate additive sedative properties; their benefits in this setting Distressing symptoms, such as pain or effects as a component of drug combina- derive from their sedative, hypnotic, an- dyspnea, may contribute to agitated delir- tions for (77–81). The xiolytic, and amnestic effects. ium, and analgesia and other treatments analgesics recommended in recent and are the most commonly should be optimized before sedatives are multisociety practice guidelines are mor- used benzodiazepines. As with all cen- employed (75). Removing restraints, pro- phine, fentanyl, and hydromorphone trally acting drugs, the time to onset of moting sleep, reducing noise and lights, (82). The effects of morphine on cardiac the benzodiazepines is primarily depen- and providing a soothing family member or preload may also contribute to improve- dent on the lipid solubility of the drug. Midazolam is highly lipophilic and has the most rapid onset of effect following Table 3. Opioid analgesic agents (5, 79, 82) intravenous administration, with maxi- Onset Duration Typical mal response in approximately 5–10 Equivalent to Peak of Effect, Typical Adult Pediatric mins. Lorazepam is the least lipid soluble Dose, IVa Effect, mins hrs Dose, IV Dose, IV Typical Infusion Rate of the parenteral benzodiazepines and re- quires up to 20–25 mins to achieve max- Morphine 10 mg 20–30 3–4 2–10 mg 0.1 mg/kg 0.05–0.5 mg·kg-1·hr-1 imal response following intravenous ad- ␮ ␮ ␮ ␮ -1 -1 Fentanyl 100 g 2–5 0.5–2 0.5–2 g/kg 1–5 g/kg 0.5–10 g·kg ·hr ministration (86, 87). There are no Hydromorphone 1.5–2 mg 20–30 3–4 0.5–2 mg — — convincing data of important differences IV, intravenous. in clinical response or safety when each aEquivalent doses are approximations and are of limited value due to differences in onset and agent is used appropriately. duration of effect. is an intravenous general an-

Table 4. Sedative agents (5)

Typical Initial Onset to Peak Duration of Typical Initial Pediatric Typical Initial Infusion Typical Initial Infusion Effect, mins Effect, hrs Adult Dose, IV Dose, IV Dose, Adult Dose, Pediatric

Sedatives Lorazepam 20–25 2–4 1–3 mg 0.05 mg/kg 0.5–4 mg/hr 0.05–0.1 mg·kg-1·hr-1 Midazolam 5–10 1.5–2 0.02–0.1 mg/kg 0.1 mg/kg 1–5 mg/hr 0.05–0.1 mg·kg-1·hr-1 Propofol 1–2 0.1–0.4 1 mg/kg 1 mg/kg 10–50 ␮g·kg-1·min-1 10–50 ␮g·kg-1·min-1 Neuroleptics Haloperidol 25–30 2–4 0.5–20 mg — 3–5 mg/hr —

IV, intravenous.

958 Crit Care Med 2008 Vol. 36, No. 3 esthetic widely used at sedative doses in rarely misunderstood) (92). Most families lational aspects of how the information is critically ill patients. The primary advan- need reassurance that everything appro- shared with families have been shown to tages of propofol are its very rapid onset priate was done to help their family mem- be more important than details of the spe- of effect combined with a rapid offset of ber. News of a patient’s death should be cific content of the information. Training effect, allowing relatively easy titration to given in person, whenever possible. When and clear role responsibilities for the inter- the desired level of sedation (82, 88). families must be contacted by telephone, disciplinary team can reduce the stress as- Other sedative agents, including the special care should be taken in how the sociated with requests for organ donation barbiturates and ketamine, have a limited information is disclosed. and increase donation rates. role in this setting and can be considered Determination of . The Bereavement and Support. Bereave- for selected patients who may be refractory frequency with which death is determined ment and support services are essential to or intolerant to usual agents (47, 89). by neurologic criteria varies greatly de- the delivery of high-quality palliative Haloperidol is considered the drug of pending on the patient population served care, for both the family and the clini- choice for treatment of delirium in criti- by an ICU, but in one study of Ͼ6,000 cians. Assisting families to cope with the cally ill patients (82, 90). Due to its long patients who died in ICU, 6% were diag- impending death, complete important elimination half-life, haloperidol usually nosed as dead on the basis of neurologic life tasks, and engage in meaningful rit- requires a loading regimen for initial con- criteria (93). Standard criteria for ascer- uals is a response to the family’s antici- trol of symptoms. Haloperidol reaches taining the diagnosis of brain death in patory . The care of the body after maximal effect approximately 25–30 mins adults are available (94), although studies death, making funeral plans, and decid- following an intravenous dose and can be show considerable variability in how the ing about autopsy are key bereavement repeated every 15–30 mins as needed (82). diagnosis is made around the world (95). tasks following a person’s death. After a It has been suggested that the intravenous Similarly, criteria used for determining patient’s death, families benefit from in- dose can be doubled every 30 mins until brain death in children are also variable, formation about educational and spiritual response is achieved (91); however, single perhaps reflecting the fact that the guide- resources, support groups, and contact Ͼ adult doses 20 mg are rarely required or lines for children have not been updated information for profession- recommended. Haloperidol has no analge- since 1987 (96). There is not general con- als with expertise in bereavement (6, 7, sic activity and does not have significant sensus on the advisability of having family 19, 22, 98, 102). sedative effects as a single agent. It is typi- members present at the time testing is per- Similarly, clinicians also have impor- cally combined with opioid analgesics and formed (97). tant bereavement needs. Although the sedative agents to manage acute agitated Organ Donation. Organ and tissue do- needs of clinicians have not been rou- behavior in critically ill patients. nation is an integral part of end-of-life tinely addressed, their unrecognized suf- Although many drugs can be used to decisions and bereavement practices (98, fering and grief may undermine the ef- treat pain and agitation at the end of life, 99). Routine questioning about advance fectiveness and quality of care (103, 104). the importance of the practitioner’s fa- directives and preferences at admission to An Institute of Medicine report stressed miliarity with the drug cannot be over- the hospital may identify potential organ the importance of developing strategies emphasized. In the last few hours of life, donors (100). Requests should focus on there may be only one chance to prevent allowing families the opportunity to de- to help professionals preserve their own pain, dyspnea, and delirium. As much ex- termine whether organ donation is con- integrity and well-being (105). pertise is necessary for the appropriate sistent with either the patient’s known Needs of the Interdisciplinary Team. use of drug therapy at the end-of-life as wishes or what the patient would likely The clinical team needs to be interdiscipli- for any other pharmacologic intervention have wanted. nary and committed to cooperation and in critical care. Donation by Cardiac Death (DCD) re- clear communication. Significant discrep- quires protocols for withdrawal of life- ancies exist between critical care nurses and physicians about satisfaction with end- Considerations at the Time of sustaining therapies under carefully con- of-life decision-making processes, includ- Death trolled conditions (101). Some have concerns about the potential effect of ing ethical issues (106, 107). Physicians Even when anticipated, the time sur- DCD on the quality of end-of-life decision may be unaware of nurses’ perspectives on rounding the death of a patient can be making and care in the ICU, but research conflict (108). More than half of the issues stressful for both families and clinicians. and debate are needed to develop consen- identified by critical care nurses as either Anticipation of the tasks that must be sus regarding the best approach to obstructing or facilitating quality care for performed can help ensure that end-of- achieve high-quality palliative care si- dying patients involve some aspect of com- life care is delivered appropriately and multaneously with allowing patients and munication (27). compassionately. families the option of DCD. End-of-life care requires support sys- Notification of Death. Pronouncing Critical care professionals are respon- tems and resources for that death is a solemn ritual and an important sible for the integrity of the organ dona- address moral distress, burnout, and competency for end-of-life care (7). Se- tion process in collaboration with the or- posttraumatic stress disorder (109–112). nior leadership and the involve- gan procurement organization. Best Systems of support may include regular ment of other professionals, such as the practices require that the request is made debriefings after patient deaths, access to nurse, chaplain, or social worker, are im- in a private location and paced to give the spiritual and psychosocial resources, and portant. The communication should family time to accept the death (98). relief from responsibilities for some time avoid euphemisms and use plain lan- United States regulations require that the after a patient dies (27, 104, 113). Within guage gently and empathically (dead, dy- person requesting organ donation be spe- the ICU culture, norms for appropriate ing, death, and die are all words that are cifically trained to perform this task. Re- behavior, mutual support, communica-

Crit Care Med 2008 Vol. 36, No. 3 959 tion, and resolution of ethical conflicts mortality rate, the intervention has re- sures for high-quality end-of-life care in are essential. duced the “prolongation of dying.” There the ICU (136, 137). Although these mea- are some important theoretical limita- sures have not yet been validated, they Research, Quality Improvement, tions to using ICU days as an outcome have promise for improving the quality of and Education measure for such interventions. For ex- care in all ICUs. ample, an intervention that rushed fam- Education. Although education in this End-of-life care in the ICU, like many ilies to make decisions might be associ- area is improving, studies document the aspects of critical care, offers important ated with decreased family satisfaction deficiencies in education about end-of- opportunities for research, quality im- with care and increased family depres- life care for physicians and nurses (138– provement, and education. There has been sion, anxiety, or posttraumatic stress dis- 144). Considerable work has been done in a growing literature on each of these topics order (20, 21). Nonetheless, reducing ICU education about end-of-life care that can in the past few years that can help guide length of stay, particularly if it is associ- be adapted to the ICU setting, including researchers, clinicians, administrators, and ated with high levels of family satisfaction the development of training programs educators. (115), seems like an appropriate surro- such as Education for Physicians on End- Research. A recent interdisciplinary gate marker for improved quality of care. of-Life Care (145) and End-of-Life Nurs- working group identified four areas of Another potential assessment of quality ing Education Consortium (146) and cur- need for a research agenda to improve of end-of-life care is family or clinician ricula developed for end-of-life care: defining the problems, satisfaction with care. Patient satisfaction training (147). The Initiative identifying solutions, evaluating solutions, is not a practical outcome measure since for Pediatric Palliative Care is a curricu- and overcoming barriers. In each of these the vast majority of patients are not able lum focused on the care of children areas, important unanswered questions respond to questions at a time when end- (148). In addition, clinicians need oppor- were identified (114). Two important prin- of-life care is being provided in the ICU tunities to address their own emotions ciples emerged: Interventions that are (119). Measures that have shown some and reactions to working with dying pa- likely to improve the quality of care evidence of reliability and validity after tients and their families (144). Educa- should be developed with preliminary death in the ICU include the Quality of tional programs that offer clinicians the data supporting their efficacy before be- Dying and Death (49, 69, 120–122), the opportunity to talk about their experi- ing subjected to randomized trials, and Family Satisfaction with ICU (123, 124), ences caring for dying critically ill pa- outcome measures must be identified and the Critical Care Family Satisfaction tients and their families and the effect of that can be used to demonstrate the im- Survey (125). Finally, there is evidence providing this care on their own emo- provements. that improved communication about tions and work attitudes can be valuable One lesson from prior research in this end-of-life care can significantly reduce (113). area is that large randomized trials of psychological morbidity in family mem- interventions should have supporting ev- bers after a death in the ICU (22). CONCLUSIONS idence from smaller studies demonstrat- Quality Improvement. Many publica- ing “proof of concept.” A number of re- tions exist on the issue of quality im- End-of-life care is emerging as a com- cent interventions have shown promising provement in the critical care setting prehensive area of expertise in the ICU results, including standardized end-of- (126–134), and there is growing recogni- and demands the same high level of life family conferences with bereavement tion that end-of-life care in the ICU is an knowledge and competence as all other pamphlets and routine palliative care and important target for quality improvement areas of ICU practice. There has been an ethics consultation (22, 115, 116). These efforts. Recently, a working group identi- increased focus on research, education, studies suggest that end-of-life care can fied the domains of quality for end-of-life and quality improvement to improve end- be improved but highlight the impor- care, and these domains provide a frame- of-life care in the ICU setting. There is tance of preliminary data to establish fea- work for understanding the diverse issues also increasing consensus within the field sibility and improvement in intermediate and potential targets for quality improve- of critical care on some important prin- outcomes before launching large ran- ment efforts focused on end-of-life care in ciples, such as shared decision making domized trials to provide definitive proof the ICU (135). The domains were 1) pa- and the importance of caring for patients’ of effectiveness. tient- and family-centered decision mak- families. 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