Point of View Article

Humane terminal extubation reconsidered: The role for preemptive analgesia and sedation*

J. Andrew Billings, MD

Patient comfort is not assured by common practices for ter- initiating excellent analgesia and sedation inexorably subjects minal extubation. Treatment guidelines suggest minimizing dos- patients to distress. Therefore, when is inevitable and age of opioids and sedatives. Multiple lines of evidence indicate imminent after extubation, suffering should be anticipated, con- that clinicians are limited in their ability to recognize distress in cerns about respiratory depression dismissed, and vigorous pre- such patients and tend to undermedicate patients in distress. Yet emptive deep sedation or anesthesia provided. (Crit Care Med suffering of any significant degree should be unacceptable. For 2012; 40:625–630) painful procedures, such as surgery, the analogous practice of KEY WORDS: analgesia; extubation; palliative sedation; preemp- postponing anesthesia until the patient evidences discomfort tive medical ethics; terminal weaning would never be tolerated. Waiting for signs of suffering before

“ erminal extubation” is the sciousness. Likewise, these patients are fortable immediately after withdrawal of term broadly used to denote terminal, meaning that survival lasting ventilatory support: the procedure of removing beyond a few minutes or hours would be However, five minutes into the vigil, ventilatory support—either unprecedented. It cannot be directly ap- his condition changed. He slowly opened mechanicalT ventilation or noninvasive plied to brain dead patients or to the his eyes, looked around the room, and positive pressure ventilation—from a pa- many persons for whom prolonged sur- grimaced in the only way his muscles tient who is expected to die very soon vival is a possibility after extubation. would allow. The quiet of the room was after withdrawal of such support. The deafening. We were all as paralyzed as he procedure is also called “terminal wean- was, as he stared deeply into our eyes. ing” or “immediate extubation,” depend- The Procedure Was he suffering? Was he gasping for ing on when and how an endotracheal breath? Was he trying to scream? Was he tube is removed, and is also sometimes Terminal extubation entails either: 1) saying his last goodbyes? Was he truly labeled “compassionate extubation.” This reduction and eventual cessation of ven- aware?-Anonymous, personal commu- essay argues that clinical guidelines and tilatory support (e.g., by lowering oxygen nication. policies have not adequately acknowl- concentration, pressure support, and/or edged or addressed the suffering that may assisted respiratory rate), typically called The Growing Importance of “terminal weaning”; or 2) “immediate ex- be experienced by alert or even partially Terminal Weaning conscious patients in anticipation of, and tubation” (or similarly, removal of a pos- especially after, initiating the extubation itive pressure mask); or 3) some mixture Withdrawal of life-sustaining mea- procedure. Heightened attention to suf- of both. Additionally, opioids or sedatives sures, such as terminal weaning, is now a fering near the end of life and accumu- may be administered either in a preemp- common and increasingly frequent pro- lating research data, including remark- tive manner to anticipate and prevent cedure before hospital death (15–17). As able new perspectives from the brain symptoms or in a reactive approach that many as 90% of in intensive care sciences, compel a fresh approach to this treats symptoms when they arise (1). units (ICUs) involve withdrawal of life procedure. Studies comparing the outcome of supports (16), typically for sedated or un- The argument presented here deals various approaches to withdrawing venti- conscious patients (18). In a recent re- with removing ventilatory support for pa- latory support or of particular analgesic view of 851 patients who received me- tients who have some degree of con- or sedative regimens are lacking. chanical ventilation in an ICU, 63% were Thoughtful and detailed clinical guide- successfully weaned, but 17% died while lines are available to help clinicians (2– being ventilated and the remaining *See also p. 700. 12). However, both the medical literature 19.5% died after mechanical ventilation From Massachusetts General Hospital, Cam- and anecdotal reports (13, 14) describe was withdrawn (19). Notably, most pa- bridge, MA. instances of patients gasping for air, tients undergoing terminal extubation The author has not disclosed any potential con- rapidly, and becoming cyanotic are considered decisionally incapacitated. flicts of interest. For information regarding this article, E-mail: while still apparently conscious during In one study, only 4% of patients partic- [email protected] terminal extubation, as well as serious ipated in the decision to extubate (20). Copyright © 2012 by the Society of Critical Care distress on the part of families and staff. Terminal extubation of the alert patient Medicine and Lippincott Williams & Wilkins Consider this patient with amyotrophic involves unique psychosocial, ethical, le- DOI: 10.1097/CCM.0b013e318228235d lateral sclerosis, who had appeared com- gal, and procedural considerations (21).

Crit Care Med 2012 Vol. 40, No. 2 625 How Is Suffering Treated in tions; and 3) ideas, values, and personal and sedatives are added or increased to Terminal Weaning? feelings about clinician agency in a death the previous regimen after withdrawal of (38, 39). ventilatory support (i.e., reactive treat- Many articles about terminal weaning ment) (10, 23, 27, 38, 51). This confirms state that distress can be avoided or Patient Comfort: Terminally that starting doses were not adequate to palliated, yet emphasize treating dis- Weaned Patients Suffer prevent suffering. And, of course, none tress only when it is recognized– Needlessly of these drugs will instantly alleviate reactive treatment rather than preemp- distress; relief of suffering awaits the tive management. Thus, if respiratory Many lines of evidence suggest that onset and perhaps the peak effect of distress occurs during the procedure, as patients may suffer during terminal intravenously administered analgesics judged by observation of the patient’s weaning: and sedatives. breathing pattern or changes in vital Anticipatory Distress. First, suffering Inadequate Recognition of Distress. signs, opioids and/or sedatives are initi- is present in patients who are aware of Relying on the observation of clinical ated or increased until the patient seems the decision to initiate withdrawal of ven- signs of respiratory distress—restless- comfortable and the weaning can con- tilatory support and not treated preemp- ness, moaning and agitation, and changes tinue. Campbell (22) describes three tively. Many of these patients will have in vital signs—does not guarantee that cases of gradual weaning in great detail, already experienced serious dyspnea, in- significant suffering is detected or ade- lasting 5–12 hrs, but larger series show a cluding during weaning attempts. The quately addressed. Ill patients who are shorter average interval from withdrawal prospect of terminal extubation and fears cognitively impaired may not be able to to death, with deaths occurring from 35 of inadequate symptom control—air express their discomfort, yet their unre- mins to 34 hrs (10, 23–29). The possi- hunger, , and suffocation—can sponsiveness does not mean suppressed bility of suffering that is not readily be terrifying for the patient who is about awareness of distress. Campbell (52) has observable is not mentioned. to die. Among the reasons for requesting recently reported on the ability of pa- Dosing With Opioids and Sedatives. hastening of death, fear of choking was tients who are near death to report dys- Guidelines on terminal weaning regularly present in 70% of patients who decided pnea: over half of patients could not pro- indicate that small doses of opioids or on or physician-assisted sui- vide a yes/no answer, and only half of sedatives may be prescribed before wean- cide in The Netherlands (40). Honest re- those who provided an answer could ing, or that current doses may be in- assurance that the patient will not expe- quantify their distress with a visual ana- creased. Liberal sedation practices may rience such symptoms can only be log scale. Neuromuscular conditions and sometimes be encouraged by statements provided if the patient will be deeply se- sedation may dampen or obliterate ob- that the alleviation of suffering is essen- dated or anesthetized for the procedure. servable responses to noxious stimuli tial and that no maximum analgesic dos- Undertreatment of Symptoms. Ne- without adequately interfering with age exists (30–34). One guideline notes glect or undermedication of physical dis- pain or dyspnea. Even anesthesia for that “the total amount of drugs re- comfort has been widely documented in surgery can be accompanied by a low quired for any individual patient may patients with terminal conditions (41). incidence (0.007% to 0.7%) of aware- far exceed any preconceived notions of Common clinical procedures, such as ness, including pain, helplessness, fear, usual … doses” (8). On the other hand, chest tube removal or tracheal suction, and panic (53–55). some articles caution against high doses, regularly cause pain and are not managed Recent progress in the neurosciences and the majority of articles advise that with preemptive analgesics (42–45). The also should lead us to doubt our ability to opioids and sedatives should be carefully SUPPORT study reported that 70% of recognize suffering reliably. A variety of titrated with dosages “commensurate conscious patients dying with lung can- studies suggest that seemingly high-level with patient distress” (8). The provision cer or with multiple organ failure and a brain processing continues in the persis- of analgesia and sedation is described as a malignancy had severe dyspnea (46). In a tent vegetative state (56–59) and during “difficult balance,” since “sedation, espe- retrospective review, death rattle was deep sedation (60). For these patients, cially heavy sedation, virtually ensures present in 23% of patients (48), while distinct electrophysiological patterns or that the patient will die” (35). Another occurred in 30% of patients after functional images of the brain appear the guideline asserts that drugs should be routine extubation (47). During with- same as what is observed in normal per- titrated to “cessation of symptoms–not drawal of life supports in a neurology sons in response to noxious stimuli, and the cessation of life” (36). Thus, minimi- ICU, 59% of patients showed signs of ag- may be detected without outward signs of zation of opioid and sedative doses re- onal or labored breathing, and 34% de- distress (61–64). Of course, the presence ceives greater emphasis than minimiza- veloped while receiving an av- of such patterns alone cannot be equated tion of suffering (37). erage morphine dose of only 6.3 mg/hr with suffering. Remarkably, physicians vary by (29). In a study of British specialists, 17% greater than a ten-fold difference in how used only morphine or another opioid for Family Perceptions (65, 66) much morphine and sedatives they pre- terminal weaning (49). Even when palli- scribed for terminal weaning, suggesting ative sedation has been prescribed for in- Attention to the impact of terminal that the considerable variation in practice tractable distress, 17% of patients have weaning on the family is also a major is not simply based on patient need (18). inadequate symptom control 4 hrs after concern for the clinician. According to As discussed in the following sections, initiating treatment (50). Brody: physicians identify three major concerns Delay in Symptom Alleviation. Re- Family members should be assured that guide their choices about medica- ports on terminal weaning consistently that the patient’s comfort is of primary tion: 1) patient comfort; 2) family percep- show that significant amounts of opioids concern, that sedation will be used even

626 Crit Care Med 2012 Vol. 40, No. 2 to the point of unconsciousness to pro- drawal of ventilatory support, clinicians nasia nor assisted but good vide comfort, and that involuntary move- should not preemptively suppress respi- (8). ment or gasping does not reflect suffer- ration, lest they hasten or cause the death Is it Legal? Fear of prosecution for ing if the patient is either in a coma or of a patient who might have survived committing euthanasia is also cited as a properly sedated (5). weaning. Clinicians will, of course, err on barrier to preemptive anesthesia (8). The management of pain and other the side of preserving life, and should However, U.S. courts, including the Su- symptoms is a major source of conflict engage in shared decision making with preme Court, have repeatedly affirmed between family and staff (67, 68). Agonal the patient or surrogate on whether ter- the right of patients to receive sedation to breathing may be interpreted as suffer- minal extubation is appropriate. prevent or treat suffering (81). ing. Family members also report distress Clinician confidence about decisions … a patient who is suffering from a about death rattle, which occurs in 36% to withdraw life support in the ICU has and who is experiencing of patients, as well as about stridor after been studied in a survey using 12 patient great pain has no legal barriers to ob- extubation (69–74). scenarios. Respondents were very confi- taining medication, from qualified phy- dent about their decisions less than a sicians, to alleviate that suffering, even Staff Perspectives: What Are third of the time (83). Certainly, even to the point of causing unconsciousness the Barriers to Preemptive patients who have undergone prolonged and hastening death (97). Anesthesia for Terminal mechanical ventilation may eventually No provider has ever been prosecuted Weaning? survive extubation and enjoy an accept- successfully or held civilly liable for such able quality of life (84, 85). A few retro- treatment (95). Still, the legal basis for Clinicians are often uncomfortable spective reviews cite survival to discharge the practice is not widely appreciated, about terminal extubation. They voice after terminal extubation at a rate of putting the clinician who performs pre- emotional distress about both the deci- 11%–14%, (28, 86). Unfortunately, these emptive sedation at risk for professional sion and about participating in the pro- retrospective studies provide no infor- or legal censure. cedure, and they express concerns about mation about how the prognostication What if the Family Objects? Even if professional ethics and legality (35, 75– was made or the clinicians’ degree of preemptive anesthesia is seen as the 79). In a large Canadian study on termi- certainty. “right thing to do” for terminal weaning, nal extubation, at least one ICU clinician staff are faced with potential misunder- Prognostic models that rely on objec- expressed discomfort with the care plan standing and conflict with the family (61, tive measures have not been useful in on at least one occasion for 43% of pa- 98, 99), a topic beyond the scope of this predicting survival or making end-of-life tients, and nurses were more likely to article. decisions for individual patients (87). In- express discomfort than physicians (80). How Does One do it? Preemptive an- deed, prognostic uncertainty is a perva- Clinician reluctance to perform terminal esthesia for terminal weaning is not sive issue in medicine; physicians regu- extubation in alert patients is reflected in taught as a clinical skill nor described in larly need to estimate prognosis to make the fact that a number of patients have textbooks. Choosing the right doses of good decisions, some of which have life- had to go to court to plead for withdrawal medication for preemptive sedation is of ventilatory support and preemptive or-death implications (88). Avoiding such complicated by individual differences in anesthesia (81). Prendergast and Pun- decisions, such as never choosing to response to drugs. Anesthesiologists, tillo (9) suggest that: “Support from withdraw life supports, presents its own however, are familiar with this proce- unit leaders, hospital chaplains, or terrible problems. dure, and can provide appropriate guide- members of the ethics committee can But some prognostic judgments are lines for choosing agents, adjusting and should be made available to ICU clear or clear enough. When acceptable doses, and assessing the level of anesthe- clinicians who struggle with ethical and survival would be unprecedented, termi- sia (100). other practice issues during their care nal extubation may be appropriate. For most clinicians, using very high of dying patients”. Is it Ethical? As stated by Schneider- doses of opioids and sedatives is unfamil- Does the Patient Really Want to Die? man (89): “Is it morally justifiable not to iar and potentially disconcerting. The A patient’s or surrogate’s request for ter- sedate this patient before ventilator range of expert opinion on analgesic use minal weaning does not mean that the withdrawal?” is remarkably variable (101), and doses procedure should be performed. Appro- Typically, terminal extubation is justi- “that are very large by conventional stan- priate evaluation of requests to hasten fied by the principal that double effect dards may not be ‘excessive’ in certain death include attention to symptom con- justifies terminal extubation (90–94) and clinical situations” (102). trol, decisional capacity, depression, du- distinguishes it from euthanasia (95). What if it Feels Wrong? Seeing a pa- rability of wishes, absence of coercive in- The intent of sedation is to prevent and tient die in front of you is an extraordi- fluences, and the impact of the act on treat grave distress, while the unintended nary and daunting experience, and can be family (82). Such an evaluation requires but possibly foreseen effect may be has- profoundly upsetting when you have knowledge, skill, and time, and consider- tening death. Appealing to the impor- played a role in allowing it to happen. ation should be given to consultation tance of intention (96) and the principal Withdrawal of ventilatory support places with psychiatry and palliative care. Re- of double effect, one ethicist concluded: the act of the clinicians in close proximity gardless, staff uncertainty or ambivalence When appropriate doses of narcotics to the death, highlighting the agency of about such a drastic action is common. and sedatives are used and the intent of the clinician in ending life (23, 103). Is the Patient Really Going to Die? If the physician is clear and well docu- All the clinical, ethical, and legal ar- the patient has a reasonable chance to mented, preemptive dosing in anticipa- guments for preemptive anesthesia in survive in acceptable health after with- tion of pain and suffering is not eutha- terminal weaning do not address the

Crit Care Med 2012 Vol. 40, No. 2 627 moral distress that may be experienced in tially conscious patient who may antici- to assure comfort, regardless of concerns performing the procedure (104, 105). As pate and experience suffocation. Families about depressing respiratory drive. highlighted in a 1992 article, entitled suffer too, especially witnessing labored “Disconnecting a ventilator at the request or agonal breathing and “death rattle.” At ACKNOWLEDGMENT of a patient who knows he will then die: the same time, the members of the The doctor’s anguish” (35), terminal ex- healthcare team may face considerable Drs. Susan Block and Edward Lowen- tubation for a patient who is capable of distress about whether terminal extuba- stein provided invaluable advice on this experiencing suffering can provoke con- tion with preemptive anesthesia is the manuscript. siderable emotional stress for staff. 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