Robert D. Truog

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

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

Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine.

T hese recommendations are intended to provide information and advice for clinicians who deliver end-of-life care in intensive care units (ICUs). The number of deaths that occur in the ICU after the withdrawal of life support is increasing, with one recent survey finding that 90% of patients who die in ICUs now do so after a decision to limit therapy (1). Although there is significant variability in the frequency of withdrawal of life support both within countries (2) and among cultures (3), the general trend is international in scope (4). Nevertheless, most evidence indicates that patients and families remain dissatisfied with the care they receive once a decision has been made to withdraw life support (5). Although intensive care clinicians traditionally have seen their goals as curing disease and restoring health and function, these goals must now expand when necessary to also include assuring patients of a “good death.” Just as developments in knowledge and technology have dramatically enhanced our ability to restore patients to health, similar developments now make it possible for almost all patients to have a death that is dignified and free from pain. The management of patients at the end of life can be divided into two phases. The first concerns the process of shared decision-making that leads from the pursuit of cure or recovery to the pursuit of comfort and freedom from pain. The second concerns the actions that are taken once this shift in goals has been made and focuses on both the humanistic and technical skills that must be enlisted to ensure that the needs of the patient and family are met. Although both of these issues are critically important in end-oflife care, the decision-making process is not unique to the ICU environment and has been addressed by others (6 –11). These recommendations, therefore, do not deal primarily with the process that leads to the decision to forego lifeprolonging treatments but rather focus on the implementation of that decision, with particular emphasis on the ICU environment. This division of the process into two phases is necessarily somewhat artificial. Patients and families do not suddenly switch from the hope for survival and cure to the acceptance of death and pursuit of comfort. This process happens gradually over varying periods of time ranging from hours to weeks. Similarly, the forgoing of life-sustaining treatments rarely happens all at once and is likewise a stepwise process that parallels the shift in goals. Although acknowledging the relationship between the process of decision-making and the corresponding actions, these guidelines will focus on the latter. These recommendations are written from the emerging perspective that palliative care and intensive care are not mutually exclusive options but rather should be coexistent (12–14). All intensive care patients are at an increased risk of mortality and can benefit from inclusion of the principles of palliative care in their management. The degree to which treatments are focused on cure vs. palliation depends on the clinical situation, but in principle both are always present to some degree. Figure 1 illustrates a useful paradigm for the integration of palliative care and curative care over the course of a patient’s illness. Although many patients are best served by transfer to other environments (e.g., home, hospice, or ward) that may be more conducive to palliative care, some patients are so dependent on ICU technology at the end of life that transfer is not possible. For those who are expected to survive for only a short time after the removal of life-sustaining technology, transfer of the patient to a new environment with new caregivers is awkward and may disrupt the patient’s medical care. For these reasons, among others, intensive care clinicians must become as skilled and knowledgeable at forgoing life-sustaining treatments as they are at delivering care aimed at survival and cure.

Parental perspectives on end-of-life care in the pediatric intensive care unit

Objective To identify priorities for quality end-of-life care from the parents’ perspective. Design Anonymous, self-administered questionnaire. Setting Three pediatric intensive care units in Boston. Participants Parents of children who had died after withdrawal of life support. Measurement and Main Results Parents’ views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their childs pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their childs final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. Conclusions Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their childs pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.

New and Lingering Controversies in Pediatric End-of-Life Care

Objectives. Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study’s objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. Methods. Three children’s hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. Results. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, “At times, I have acted against my conscience in providing treatment to children in my care.” For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, ∼20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, “Sometimes I feel we are saving children who should not be saved,” as agreed with the statement, “Sometimes I feel we give up on children too soon.” However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, “Sometimes I feel the treatments I offer children are overly burdensome.” Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92–98%, depending on specialty) and nurses (range: 83–85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. Conclusions. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians’ regard for the dead-donor rule.

Tolerance and Dependence in Neonates Sedated with Fentanyl during Extracorporeal Membrane Oxygenation

We undertook a retrospective chart review of 37 neonates who received fentanyl by continuous infusion while undergoing extracorporeal membrane oxygenation (ECMO) between May 1986 and October 1988. We quantified the doses of all sedatives utilized, determined the incidence of neonatal abstinence syndrome (NAS), and identified risk factors associated with NAS. We determined peak fentanyl infusion rate, mean fentanyl infusion rate, total fentanyl dose, and duration of ECMO therapy. NAS was observed in 21 of 37 neonates (57%). In both the NAS and non-NAS neonates, mean infusion rate increased steadily during ECMO therapy, from a mean of 11.6 +/- 6.9 (SD) micrograms.kg-1.h-1 on day 1 to a mean of 52.5 +/- 19.4 (SD) micrograms.kg-1.h-1 by day 8. Total fentanyl dose and duration of ECMO were significantly greater in neonates with NAS. We found that neonates with a total dose greater than 1.6 mg/kg or an ECMO duration greater than 5 days had a significantly greater incidence of NAS (chi-squared test, P less than 0.01 and P less than 0.005; odds ratios = 7.0 and 13.9, respectively). With multiple logistic regression, ECMO duration was found to be the most powerful predictor of the occurrence of NAS. We also measured plasma fentanyl concentrations in a separate group of 5 neonates receiving fentanyl by continuous infusion for sedation. Fentanyl concentrations increased steadily during the period of infusion, suggesting the development of tolerance to the sedating effects. We conclude that continuous administration of fentanyl for sedation is associated with the uniform development of tolerance and a significant incidence of dependence. Alternative approaches to sedation should be investigated.

Is informed consent always necessary for randomized, controlled trials? .

Consider this paradox: if a physician reads a case report about a novel method of ventilation for critically ill patients and wants to try it in the next several patients with respiratory failure h...

Role of brain death and the dead-donor rule in the ethics of organ transplantation.

The “dead-donor rule” requires patients to be declared dead before the removal of life-sustaining organs for transplantation. The concept of brain death was developed, in part, to allow patients with devastating neurologic injury to be declared dead before the occurrence of cardiopulmonary arrest. Brain death is essential to current practices of organ retrieval because it legitimates organ removal from bodies that continue to have circulation and respiration, thereby avoiding ischemic injury to the organs. The concept of brain death has long been recognized, however, to be plagued with serious inconsistencies and contradictions. Indeed, the concept fails to correspond to any coherent biological or philosophical understanding of death. We review the evidence and arguments that expose these problems and present an alternative ethical framework to guide the procurement of transplantable organs. This alternative is based not on brain death and the dead-donor rule, but on the ethical principles of nonmaleficence (the duty not to harm, or primum non nocere) and respect for persons. We propose that individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead. Advantages of this approach are that (unlike the dead-donor rule) it focuses on the most salient ethical issues at stake, and (unlike the concept of brain death) it avoids conceptual confusion and inconsistencies. Finally, we point out parallel developments, both domestically and abroad, that reflect both implicit and explicit support for our proposal.

Do-not-resuscitate order after 25 years.

BackgroundIn 1976, the first hospital policies on orders not to resuscitate were published in the medical literature. Since that time, the concept has continued to evolve and evoke much debate. Indeed, few initials in medicine today evoke as much symbolism or controversy as the Do-Not-Resuscitate (DNR) order. ObjectiveTo review the development, implementation, and present standing of the DNR order. DesignReview article. Main ResultsThe DNR order concept brought an open decision-making framework to the resuscitation decision and did much to put appropriate restraint on the universal application of cardiopulmonary resuscitation for the dying patient. Yet, even today, many of the early concerns remain. ConclusionsAfter 25 yrs of DNR orders, it remains reasonable to presume consent and attempt resuscitation for people who suffer an unexpected cardiopulmonary arrest or for whom resuscitation may have physiologic effect and for whom no information is available at the time as to their wishes (or those of their surrogate). However, it is not reasonable to continue to rely on such a presumption without promptly and actively seeking to clarify the patient’s (or surrogate’s) wishes. The DNR order, then, remains an inducement to seek the informed patient’s directive.

The Dead Donor Rule and Organ Transplantation

At the dawn of organ transplantation, the dead donor rule was accepted as an ethical premise that did not require reflection or justification. Dr. Robert Truog and Franklin Miller write that, in retrospect, it appears that reliance on the dead donor rule has greater potential to undermine trust in the transplantation enterprise than to preserve it.

Difficult conversations in health care: cultivating relational learning to address the hidden curriculum.

The authors describe the philosophy and pedagogical approach of an innovative educational program, grounded in principles of relational learning and designed to improve the preparedness of health care professionals for engaging in challenging conversations with patients and families. The Program to Enhance Relational and Communication Skills (PERCS) is a project of The Institute for Professionalism and Ethical Practice at Children’s Hospital Boston, developed in collaboration with Education Development Center, Inc. The one-day workshop is interdisciplinary in its structure, includes practitioners with varying levels of professional experience, uses trained actors to portray patients and family members, and involves learners in improvised case scenarios. The program responds to several developments in contemporary health care: medical education reform, changing definitions of professional competence, and calls for greater attention to qualities of compassion, trust, and respect in practitioners’ relationships with patients and families. The program’s pedagogy responds to these developments by creating a safe climate for relational learning, by enacting emotionally challenging and ethically salient case scenarios, and by integrating patient and family perspectives in novel and substantive ways. By creating a curriculum and learning environment that explicitly embraces the moral experience of learners, the program’s developers aim to exert a countercultural influence on the dehumanizing effects of the hidden curriculum.