Dying Patients in the Intensive Care Unit: Forgoing Treatment, Maintaining Care

Up to 60% of deaths in the United States occur in acute care hospitals (1), and of these, 75% occur after decisions to forgo treatment (2, 3). Although such decisions are common in the intensive care unit (ICU), the care of dying patients raises both clinical and ethical difficulties. For example, in one survey, most ICU nurses and physicians stated that ICU interventions were often burdensome and used inappropriately (4). Although ICUs present many challenges to providing excellent end-of-life care, they also have special resources available (for example, a low patientnurse ratio that allows careful titration of intravenous medication to control dyspnea during ventilator withdrawal). This paper aims to help clinicians improve the care provided to ICU patients and families when decisions are made to limit life-sustaining treatment. It challenges the misconception that such decisions are decisions to withdraw care (5). In addition, it challenges physicians and nurses to care for dying patients with the same attention to detail, critical thinking, and compassion that they use in caring for ICU patients who are expected to survive. Patient Case Mr. McGee is a 79-year-old minister admitted with acute abdominal pain. He has been well except for complete heart block, which requires a permanent pacemaker. He lives at home and cares for his disabled wife. A perforated bowel is diagnosed, and he undergoes emergency surgical repair. Postoperatively, in the ICU, he develops the acute respiratory distress syndrome, renal failure, and candidal peritonitis. Mechanical ventilation and hemodialysis are begun. During the next 3 weeks, his mental status deteriorates so that he can no longer engage in conversations or follow commands. The ICU physician tells Mrs. McGee that her husband's chance of surviving is less than 10% and that even if he does survive, he will need long-term ventilator support and dialysis. Although Mr. McGee has no written advance directive, his family is certain that he would not want ICU care continued given these prospects. Deciding To Withdraw Life-Sustaining Interventions Although the basic values underlying end-of-life decision making (6-8) are not unique to the ICU, the setting presents unique challenges to the process. The ethical aspect of forgoing treatment resides in the legal and ethical right of the patient to determine what should happen to his or her own body. An adult patient with decisional capacity must be informed of reasonable treatment options and their possible outcomes. Patients who decide to forgo life-sustaining treatment should have these decisions honored. As a rule, a patient's considered decision should override contrary opinions of family or physicians, no matter how well-intentioned the opposing views may be. When patients who cannot make decisions are concerned, the issues become more complicated. Before admission, Mr. McGee was fully capable of decision making, and conversations about his preferences for life support may have helped his family make decisions on his behalf. However, 60% to 70% of seriously ill patients, like Mr. McGee, are unable to speak for themselves when decisions to limit treatment are considered (3, 9). Although advance directives allow patients to specify preferences in advance, they have limited usefulness, and only 10% to 20% of patients even complete them. Living wills generally apply only if a patient is terminally ill or permanently unconscious, categories that are inapplicable to many ICU patients. Moreover, patients with advance directives may receive the same care as those without them (8) or may not want them followed literally (10). In the absence of a proxy designated by the patient, it is helpful to identify a single surrogate decision maker [or, if decisions are made by consensus within the family, a single spokesperson]. The surrogate should know the patient well and be willing to serve as the patient's representative. In order of preference, decisions should be made on the basis of 1) the patient's previously stated wishes; 2) inferences based on the patient's values or life goals; or 3) the patient's best interests, as judged by weighing the benefits and burdens of treatment. Many states stipulate surrogates by using a legal hierarchy. However, the legally mandated person and the ethically appropriate person may sometimes differ. For example, a daughter may know much more about her father's preferences than a separated wife. For this reason, all capable patients should be urged on admission to the ICU (if not before) to advise caregivers about how to make decisions and should designate a health care proxy. Clinicians in the ICU should guide the proxy or surrogate through the decision-making process. Information should be given by using understandable terms and avoiding jargon. In addition, ample time should be allowed for discussion and repeated conversations. If a patient is expected to remain in the ICU for more than 2 days, holding a meeting with the patient and family within 48 hours of admission (and periodically thereafter) can help identify the appropriate goals of ICU treatment. These goals should be reevaluated by considering the patient's course and determining whether current interventions remain consistent with the treatment goals. Participants in such meetings vary but often include the patient's ICU and primary care physicians, nurses, consultants, family, close friends, religious advisor, and, most important, the patient (if possible). Spiritual Needs and Cultural Values Spiritual and religious issues are often significant factors for patients and families who are confronted by the possibility of death. An overwhelming sense of personal loss, with associated emotional and spiritual suffering, are often at the core of a dying person's and family's experience (11). Clinicians should routinely ask patients and families whether spiritual needs are being met and, if not, how the hospital's resources might be more helpful. Chaplains, social workers, and others skilled in supporting people through personal loss can be invaluable. The importance of dealing with the grief, spiritual issues, and emotions of family members emphasizes the need for multidisciplinary approaches. In addition, clinicians in the ICU should be aware of cultural differences in making decisions at the end of life. People from some cultures may be less willing to discuss resuscitation status or to forgo life-sustaining treatment (12-14) and may be less likely to complete advance directives (15, 16). Cultural and religious knowledge, sensitivity, and respect are essential when ICU staff discuss limiting life support. Use and Limits of Prognostic Models Recent advances in the use of prognostic models have improved objective predictions of hospital mortality rates for ICU patients. However, difficulty in determining if and when an individual patient will die remains a major obstacle to providing end-of-life care in the ICU. For example, the Acute Physiology and Chronic Health Evaluation (APACHE) III prognostic system (17) provides point estimates of mortality with 95% confidence intervals for the day of ICU admission, with updated predictions for subsequent ICU days. This and other models have been validated to predict outcomes of groups of patients (17-19). No controlled evidence, however, shows that prognostic models improve end-of-life decision making for individual patients. The prognostic model developed for the Study to Understand Prognoses and Preferences for Outcomes and Risk of Treatments (SUPPORT) provides 2- and 6-month estimates of survival, but this information has been shown to have minimal impact on end-of-life care for patients with serious illnesses (20). Given these limitations, would sophisticated ICU prognostic models have aided decision making for Mr. McGee? Possibly. However, most clinicians already incorporate some type of probabilistic reasoning when discussing prognosis with patients and families. Having objective estimates of survival may complement physician estimates and may help plant the seed in the minds of family members who have difficulty accepting that their loved one may die in the ICU. Because current prognostic models have considerable limitations, however, clinicians should use them only as an adjunct to the process of shared decision making (Table 1). Table 1. Limitations of Prognostic Models for End-of-Life Decision Making in the Intensive Care Unit Withdrawing Life-Sustaining Interventions After discussions with Mrs. McGee, a do-not-resuscitate order is written and dialysis is stopped. The ICU attending physician suggests that the ventilator also be discontinued, and the family agrees. Before ventilator support is stopped, vasopressors and all medications except morphine and midazolam are withdrawn. The resident discontinues enteral feedings but restarts them an hour later at the attending's request. Practice Variations Mr. McGee's care presented physicians and family with many decisions. Was the ICU the best place to care for him? Which interventions should be continued, and which should be stopped? Is artificial nutrition different from other life-sustaining treatment? The practice of withdrawing treatment in ICUs has evolved during the past 20 years. When initial recommendations for discontinuing ventilator support were published in 1983, withdrawing ventilators was rare (21). Since then, withdrawing dialysis, ventilators, and other interventions has become much more common (22, 23). A study of 136 ICUs found that 74% of 5910 dying patients had some form of treatment withheld or withdrawn before death (2). However, interinstitutional variation was striking. Individual ICUs reported that anywhere from 21% to 96% of deaths were preceded by treatment limitation, and some ICUs reported no instances of withdrawing life support. This variation raises the question of whether these practice differences reflect physician or