Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine Robert D. Truog, MD; Alexandra F. M. Cist, MD; Sharon E. Brackett, RN, BSN; Jeffrey P. Burns, MD; Martha A. Q. Curley, RN, PhD, CCNS, FAAN; Marion Danis, MD; Michael A. DeVita, MD; Stanley H. Rosenbaum, MD; David M. Rothenberg, MD; Charles L. Sprung, MD; Sally A. Webb, MD; Ginger S. Wlody, RN, EdD, FCCM; William E. Hurford, MD KEY WORDS: palliative care; intensive care; end-of-life care hese recommendations are in- tients of a “good death.” Just as develop- sion-making and the corresponding ac- tended to provide information ments in knowledge and technology have tions, these guidelines will focus on the and advice for clinicians who dramatically enhanced our ability to re- latter. deliver end-of-life care in in- store patients to health, similar develop- These recommendations are written Ttensive care units (ICUs). The number of ments now make it possible for almost all from the emerging perspective that pal- deaths that occur in the ICU after the patients to have a death that is dignified liative care and intensive care are not withdrawal of life support is increasing, and free from pain. mutually exclusive options but rather with one recent survey finding that 90% The management of patients at the should be coexistent (12–14). All inten- of patients who die in ICUs now do so end of life can be divided into two phases. sive care patients are at an increased risk after a decision to limit therapy (1). Al- The first concerns the process of shared of mortality and can benefit from inclu- though there is significant variability in decision-making that leads from the pur- sion of the principles of palliative care in the frequency of withdrawal of life sup- suit of cure or recovery to the pursuit of their management. The degree to which port both within countries (2) and among comfort and freedom from pain. The sec- treatments are focused on cure vs. palli- cultures (3), the general trend is interna- ond concerns the actions that are taken ation depends on the clinical situation, tional in scope (4). Nevertheless, most once this shift in goals has been made but in principle both are always present evidence indicates that patients and fam- and focuses on both the humanistic and to some degree. Figure 1 illustrates a ilies remain dissatisfied with the care technical skills that must be enlisted to useful paradigm for the integration of they receive once a decision has been ensure that the needs of the patient and palliative care and curative care over the made to withdraw life support (5). Al- family are met. Although both of these course of a patient’s illness. though intensive care clinicians tradi- issues are critically important in end-of- Although many patients are best tionally have seen their goals as curing life care, the decision-making process is served by transfer to other environments disease and restoring health and func- not unique to the ICU environment and (e.g., home, hospice, or ward) that may tion, these goals must now expand when has been addressed by others (6–11). be more conducive to palliative care, necessary to also include assuring pa- These recommendations, therefore, do some patients are so dependent on ICU not deal primarily with the process that technology at the end of life that transfer leads to the decision to forego life- is not possible. For those who are ex- From the Ethics Committee, American College of prolonging treatments but rather focus pected to survive for only a short time Critical Care Medicine. on the implementation of that decision, after the removal of life-sustaining tech- The American College of Critical Care Medicine nology, transfer of the patient to a new (ACCM), which honors individuals for their achieve- with particular emphasis on the ICU en- ments and contributions to multidisciplinary critical vironment. environment with new caregivers is awk- care medicine, is the consultative body of the Society This division of the process into two ward and may disrupt the patient’s med- of Critical Care Medicine (SCCM) that possesses rec- phases is necessarily somewhat artificial. ical care. For these reasons, among oth- ognized expertise in the practice of critical care. The ers, intensive care clinicians must ACCM has developed administrative guidelines and Patients and families do not suddenly clinical practice parameters for the critical care prac- switch from the hope for survival and become as skilled and knowledgeable at titioner. New guidelines and practice parameters are cure to the acceptance of death and pur- forgoing life-sustaining treatments as continually developed, and current ones are system- suit of comfort. This process happens they are at delivering care aimed at sur- atically reviewed and revised. vival and cure. Supported, in part, by grants from the Argosy gradually over varying periods of time Foundation and the Harvard Risk Management Foun- ranging from hours to weeks. Similarly, dation. the forgoing of life-sustaining treatments Preparation of the Patient, the Address requests for reprints to: Robert D. Truog, rarely happens all at once and is likewise MD, Professor of Anaesthesia & Medical Ethics, Har- Family, and the Clinical Team vard Medical School, Director, MICU, FA-108, Chil- a stepwise process that parallels the shift dren’s Hospital, Boston, MA 02115. in goals. Although acknowledging the re- As the decision to forego further use of Copyright © 2001 by Lippincott Williams & Wilkins lationship between the process of deci- life-sustaining treatments is being made, 2332 Crit Care Med 2001 Vol. 29, No. 12 will often be desirable, and performance of religious services and rites at the bed- side should be encouraged (21). For chil- dren, cultural and spiritual observances should be oriented toward providing an age-appropriate understanding of dying, as well as providing the parents and fam- ily with meaningful rituals for coping with the death of a child. Needs of the Family. Although the needs of the patient must be the primary focus of caregivers, there is growing con- sensus that a family-centered approach is particularly important in end-of-life care (22). Families of the dying need to be kept informed about what to expect and about what is happening during the dying process. Communication between clini- cians and grieving families may be diffi- cult in the absence of a prior relationship, as is frequently the case in the ICU. Pri- mary care providers and other more fa- Figure 1. Palliative care within the experience of illness, bereavement, and risk. From Frank D. Ferris, MD, Medical Director, Palliative Care Standards/Outcomes, San Diego Hospice, 4311 Third Avenue, miliar clinicians may be able to provide a San Diego, CA, USA 92103–1407. helpful interface with the ICU team. After conducting interviews, Hampe (23) identified eight needs of spouses of the family and clinical team must be pre- management of their pain and distress dying patients in the hospital setting: to pared for what is to follow. As familiar as will be the highest priority of their care- be with the dying person; to be helpful; to many clinicians may be with the process givers. Depending on personal prefer- be assured of the comfort of the dying of withdrawing life support, it is a singu- ences and spiritual considerations, some person; to be informed of the person’s lar event in the life of the patient and patients will want to be more sedated condition; to be informed of impending often is unprecedented for family mem- than others. Patients should understand, death; to ventilate emotions; to be com- bers. Therefore, they may suffer great however, that the clinicians will take forted and supported by family members; anxiety during the experience. Clear and their cues from the patient and will try to and to be accepted, supported, and com- explicit explanations on the part of the tailor the administration of sedation and forted by health professionals. Parents of clinician may alleviate anxiety and refo- analgesia to the individual needs and de- children in pediatric intensive care units cus familial expectations. sires of the patient. have identified their own needs, which Needs of the Patient. The healthcare Closely related is the need to assure Meyer et al. (24) arranged in a useful team has an obligation to provide care patients that they will be treated with hierarchy: physical needs such as hunger that relieves suffering arising from phys- respect and dignity, both during and after and sleep; safety of their child; ready ac- ical, emotional, social, and spiritual the dying process. A policy that explicitly cess to their child; access to optimal sources (7, 15–17). The patients in the allows and encourages the continuous health care, accurate information from study by Singer et al. (18) identified five presence of family and friends at the bed- the healthcare team; participation in domains of good end-of-life care: receiv- side is one means of expressing this com- their child’s care; fulfillment of their pa- ing adequate pain and symptom manage- mitment. For patients who maintain re- rental role; social support; and emotional ment, avoiding inappropriate prolonga- lational capacity, the opportunity to say consolidation and acceptance. Family tion of dying, achieving a sense of good-bye may be of paramount impor- members may neglect their own physical control, relieving burden, and strength- tance. and emotional needs, to the detriment of ening relationships with loved ones. Patients should know that their cul- their ability to participate in decision- Most patients have already lost con- tural beliefs are understood and that cul- making and care.