Recommendations for End-Of-Life Care in the Intensive Care Unit: a Consensus Statement by the American College of Critical Care Medicine
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Special Articles Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine 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) patients 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 patient’s most of the recommendations are based on ethical and legal death and compassionate approaches to discussing options for principles that are not derived from empirically based evidence. organ donation. 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 sedatives, analgesics, and nonpharmacologic area of expertise in the ICU and demands the same high level of approaches to easing the suffering 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 deaths in the sider a change in goals, from restorative Tand restoring the quality of those lives. United States now occur in or after ad- care to palliative care. 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 nursing practice in the ICU (3). Two From Harvard Medical School 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 Pharmacy, Strong and clinical practice parameters for the critical care Health, and Department of Surgery, School of Medicine practitioner. New guidelines and practice parameters cine’s inability to predict the future, and and Dentistry, University of Rochester, Rochester, NY are continually developed, and current ones are sys- to give patients a precise, reliable prognosis (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 Bioethics 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 pain 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 life support 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 physicians cision-making capacity the right to refuse appoint a guardian for the patient. An- make these decisions (12). Asking patients any and all therapies, 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 sedation (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.