Jeffrey P. Burns

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.

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.

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses.

ObjectiveTo determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DesignCross-sectional survey. SettingA random sample of clinicians at 31 pediatric hospitals in the United States. Measurements and Main Results The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%;p < .003); that ethical issues are discussed well within the team (92% vs. 59%;p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%;p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. ConclusionsNearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.

End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment.

ObjectiveTo describe the attitudes and practice of clinicians in providing sedation and analgesia to dying patients as life-sustaining treatment is withdrawn. Study DesignProspective case series of 53 consecutive patients who died after the withdrawal of life-sustaining treatment in the pediatric intensive care unit at three teaching hospitals in Boston. Data on the reasons why medications were given were obtained from a self-administered anonymous questionnaire completed by the critical care physician and nurse for each case. Data on what medications were given were obtained from a review of the medical record. ResultsSedatives and/or analgesics were administered to 47 (89%) patients who died after the withdrawal of life-sustaining treatment. Patients who were comatose were less likely to receive these medications. Physicians and nurses cited treatment of pain, anxiety, and air hunger as the most common reasons, and hastening death as the least common reason, for administration of these medications. Hastening death was viewed as an “acceptable, unintended side effect” of terminal care by 91% of physician-nurse matched pairs. The mean dose of sedatives and analgesics administered nearly doubled as life-support was withdrawn, and the degree of escalation in dose did not correlate with clinician’s views on hastening death. ConclusionClinicians frequently escalate the dose of sedatives or analgesics to dying patients as life-sustaining treatment is withdrawn, citing patient-centered reasons as their principle justification. Hastening death is seen as an unintended consequence of appropriate care. A large majority of physicians and nurses agreed with patient management and were satisfied with the care provided. Care of the dying patient after the forgoing of life-sustaining treatment remains underanalyzed and needs more rigorous examination by the critical care community.

Toward interventions to improve end-of-life care in the pediatric intensive care unit.

Although children account for only about 3% of all deaths that occur in the United States each year, these patients and their families have needs that are uniquely different from those of adult patients. To date, however, no research on interventions to improve end-of-life care in the pediatric intensive care unit (PICU) has been performed. This review seeks to facilitate and inform future interventional studies by summarizing existing descriptive data about end-of-life care in this setting. These data are organized around six domains that have been identified as critical to high-quality, family-centered care: 1) support of the family unit; 2) communication with the child and family about treatment goals and plans; 3) ethics and shared decision making; 4) relief of pain and other symptoms; 5) continuity of care; and 6) grief and bereavement support. These data are integrated and used to develop evidence-based suggestions for a variety of interventions that could be implemented and then evaluated for their potential contribution to improving the care of children dying in the PICU.

Prenatal Consultation Practices at the Border of Viability: A Regional Survey

Objective.We undertook a survey of all practicing neonatologists in New England to determine their attitudes and practices regarding prenatal consultations for infants at the border of viability. Methods.A self-administered anonymous survey, mailed to every practicing neonatologist in the 6 Northeast states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont, explored respondent attitudes and practices with respect to a hypothetical clinical scenario of a prenatal consultation for an infant at the border of viability. Results.Our final sample included 149 surveys from 175 eligible neonatologists, giving a response rate of 85%. Seventy-seven percent of respondents indicated that they thought neonatologists and parents should make the decision jointly to withhold resuscitation. Only 40% indicated that the decision actually is made by both parties. A majority of neonatologists (58%) saw their primary role during the prenatal consultation as providing factual information to the parents. Far fewer (27%) thought that their main role was to assist the parents in weighing the risks and benefits of various management options. A majority of respondents indicated that parental understanding of the mothers current medical situation (96%), desired parental role (77%), and parental prior experience with premature or handicapped children (64%) were frequently or always discussed. However, far fewer respondents reported frequently or always asking about parental interpretations of a “good quality of life” (42%), parental prior experiences with death or dying (30%), and parental religious or spiritual beliefs (25%). Short-term outcomes and complications such as the need for surfactant/respiratory distress syndrome (89%) and the risk of intraventricular hemorrhage (81%) were discussed more extensively than long-term outcomes such as motor delays or cerebral palsy (68%), cognitive delays or learning disabilities (63%), and chronic lung disease (61%). Multivariate logistic regression analysis revealed 2 characteristics that were significant predictors of shared decision-making for the final decision regarding resuscitation in the delivery room for extremely premature infants, ie, believing that the main role of the neonatologist during prenatal consultations is to help parents weigh the risks and benefits of each resuscitation option (odds ratio: 4.1; 95% confidence interval: 1.6–10.9) and having >10 years of clinical experience (odds ratio: 3.6; 95% confidence interval: 1.5–8.8). Conclusions.Overall, our results showed that neonatologists are quite consistent in discussing clinical issues but quite varied in discussing social and ethical issues. If neonatologists are to perform complete prenatal consultations for infants at the border of viability as described by the latest American Academy of Pediatrics guidelines, then they will be expected to address quality-of-life values more robustly, to explain long-term outcomes, and to incorporate parental preferences during their conversations. Potential barriers to shared decision-making have yet to be outlined.

Simulation at the point of care: Reduced-cost, in situ training via a mobile cart

Objective: The rapid growth of simulation in health care has challenged traditional paradigms of hospital-based education and training. Simulation addresses patient safety through deliberative practice of high-risk low-frequency events within a safe, structured environment. Despite its inherent appeal, widespread adoption of simulation is prohibited by high cost, limited space, interruptions to clinical duties, and the inability to replicate important nuances of clinical environments. We therefore sought to develop a reduced-cost low-space mobile cart to provide realistic simulation experiences to a range of providers within the clinical environment and to serve as a model for transportable, cost-effective, widespread simulation-based training of bona-fide workplace teams. Design: Descriptive study. Setting: A tertiary care pediatric teaching hospital. Measurements and Main Results: A self-contained mobile simulation cart was constructed at a cost of

Research in children.

8054 (mannequin not included). The cart is compatible with any mannequin and contains all equipment needed to produce a high quality simulation experience equivalent to that of our on-site center—including didactics and debriefing with videotaped recordings complete with vital sign overlay. Over a 3-year period the cart delivered 57 courses to 425 participants from five pediatric departments. All individuals were trained among their native teams and within their own clinical environment. Conclusions: By bringing all pedagogical elements to the actual clinical environment, a mobile cart can provide simulation to hospital teams that might not otherwise benefit from the educational tool. By reducing the setup cost and the need for dedicated space, the mobile approach provides a mechanism to increase the number of institutions capable of harnessing the power of simulation-based education internationally.

Results of a clinical trial on care improvement for the critically ill

The importance of medical research to the diagnosis and treatment of human diseases is well recognized. The use of human subjects, however, presents complex legal and ethical challenges for the scientific community and for society. The history of research performed on children reveals an especially vulnerable population needing special protection against violation of individual rights and exposure to undue risk. The development of guidelines and policies to protect children as research subjects is reviewed. Special focus is given to the present federal regulations that are intended to provide an ethical context for theperformance of pediatric research, including the distinction between therapeutic and nontherapeutic studies. In part, these guidelines represent a return of the pendulum to a more moderate position, after an era of restrictive regulations in reaction to past abuses of children as research subjects. As a result, federal and professional initiatives are bringing renewed focus on the need for rigorous study of childhood development and disease within an appropriate ethical framework.