Cynda Hylton Rushton

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.

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.

The circulatory-respiratory determination of death in organ donation

Objective:Death statutes permit physicians to declare death on the basis of irreversible cessation of circulatory–respiratory or brain functions. The growing practice of organ donation after circulatory determination of death now requires physicians to exercise greater specificity in circulatory–respiratory death determination. We studied circulatory–respiratory death determination to clarify its concept, practice, and application to innovative circulatory determination of death protocols. Results:It is ethically and legally appropriate to procure organs when permanent cessation (will not return) of circulation and respiration has occurred but before irreversible cessation (cannot return) has occurred because permanent cessation: 1) is an established medical practice standard for determining death; 2) is the meaning of “irreversible” in the Uniform Determination of Death Act; and 3) does not violate the “Dead Donor Rule.” Conclusions:The use of unmodified extracorporeal membrane oxygenation in the circulatory determination of death donor after death is declared should be abandoned because, by restoring brain circulation, it retroactively negates the previous death determination. Modifications of extracorporeal membrane oxygenation that avoid this problem by excluding brain circulation are contrived, invasive, and, if used, should require consent of surrogates. Heart donation in circulatory determination of death is acceptable if proper standards are followed to declare donor death after establishing the permanent cessation of circulation. Pending additional data on “auto-resuscitation,” we recommend that all circulatory determination of death programs should utilize the prevailing standard of 2 to 5 mins of demonstrated mechanical asystole before declaring death.

Defining and addressing moral distress: tools for critical care nursing leaders.

Nurse clinicians may experience moral distress when they are unable to translate their moral choices into moral action. The costs of unrelieved moral distress are high; ultimately, as with all unresolved professional conflicts, the quality of patient care suffers. As a systematic process for change, this article offers the AACNs Model to Rise Above Moral Distress, describing four As: ask, affirm, assess, and act. To help critical care nurses working to address moral distress, the article identifies 11 action steps they can take to develop an ethical practice environment.

The physician's role in discussing organ donation with families

Federal Conditions of Participation from the Health Care Financing Administration (now the Centers for Medicare and Medicaid Services) introduced in 1998 require that all families be presented the option of organ and tissue donation when death is imminent. The perception that physicians were being excluded from participating in this process led to a resolution at the American Medical Association House of Delegates meeting in December 1999, calling on the American Medical Association Council on Scientific Affairs to review the Conditions of Participation “to ensure that there is no prohibition of physician involvement in the organ donation process. . ..” The number of organs procured for transplantation in the United States is insufficient to meet needs. Families’ hospital experiences significantly affect their decisions to donate organs. Discussing severe brain injury, brain death, and organ donation after brain death with families is a specialized form of end-of-life decision-making and care in the intensive care unit; however, the knowledge, skills, and attitudes necessary for physicians and nurses to promote good end-of-life decision-making are widely variable. The federal Conditions of Participation require that those making requests of families for organ donation receive specific training. They do not prohibit physician involvement in initiating organ donation requests, provided these individuals are properly trained. Physicians have an important role in caring for patients and families in these circumstances, and the care they provide is enhanced through training, attention to the special issues involved, and collaboration with organ procurement organization personnel.

A Framework for Understanding Moral Distress among Palliative Care Clinicians

BACKGROUND Palliative care clinicians confront suffering as they care for people living with life-limiting conditions. When the degree of suffering becomes unjustified, moral distress can ensue. Promising work from neuroscience and social psychology has yet to be applied to clinical practice. OBJECTIVE Our objective was to expand a social psychology model focusing on empathy and compassion in response to suffering to include an ethical dimension and to examine how the interrelationships of its proposed components can assist clinicians in understanding their responses to morally distressing situations. ANALYSIS In the clinical context, responses to distressing events are thought to include four dimensions: empathy (emotional attunement), perspective taking (cognitive attunement), memory (personal experience), and moral sensitivity (ethical attunement). These dynamically intertwined dimensions create the preconditions for how clinicians respond to a triggering event instigated by an ethical conflict or dilemma. We postulate that if the four dimensions are highly aligned, the intensity and valence of emotional arousal will influence ethical appraisal and discernment by engaging a robust view of the ethical issues, conflicts, and possible solutions and cultivating compassionate action and resilience. In contrast, if they are not, ethical appraisal and discernment will be deficient, creating emotional disregulation and potentially leading to personal and moral distress, self-focused behaviors, unregulated moral outrage, burnout, and secondary stress. CONCLUSION The adaptation and expansion of a conceptual framework offers a promising approach to designing interventions that help clinicians mitigate the detrimental consequences of unregulated moral distress and to build the resilience necessary to sustain themselves in clinical service.

Distress and burnout among genetic service providers

Purpose: To determine the nature, sources, prevalence, and consequences of distress and burnout among genetics professionals.Methods: Mailed survey of randomly selected clinical geneticists (MDs), genetic counselors, and genetic nurses.Results: Two hundred and fourteen providers completed the survey (55% response rate). Eight discrete sources of distress were identified forming a valid 28-item scale (α = 0.89). The greatest sources of distress were compassion stress, the burden of professional responsibility, negative patient regard, and concerns about informational bias. Genetic counselors were significantly more likely to experience personal values conflicts, burden of professional responsibility, and concerns about informational bias than MDs or nurses. Burnout scores were lower among those practicing more than 20 years and nurses. Distress scores were positively correlated with burnout and professional dissatisfaction (P < 0.0001). Eighteen percent of respondents think about leaving patient care, and burnout was the most significant predictor. Predictors of burnout included greater distress, fewer years in practice, working in university-based settings, being a genetic counselor or an MD, and deriving less meaning from patient care.Conclusions: Genetic service providers experience various types of distress that may be risk factors for burnout and professional dissatisfaction. Interventions to reduce distress and burnout are needed for both trainees and practitioners.

The integration of palliative care and critical care: one vision, one voice

As technological advances transform health care and the American population ages, care at the end of life (EOL) assumes ever-greater significance. Nurses in all practice settings and specialties are challenged to integrate quality palliative care into patient care. Today, this imperative is unifying the nursing profession, with help of the Nursing Leadership Academy for End-of-Life Care.

CE: Moral Distress: A Catalyst in Building Moral Resilience

&NA;Moral distress is a pervasive problem in the nursing profession. An inability to act in alignment with ones moral values is detrimental not only to the nurses well-being but also to patient care and clinical practice as a whole. Moral distress has typically been seen as characterized by powerlessness and victimization; we offer an alternate view. Ethically complex situations and experiences of moral distress can become opportunities for growth, empowerment, and increased moral resilience. This article outlines the concept and prevalence of moral distress, describes its impact and precipitating factors, and discusses promising practices and interventions.

What keeps you up at night? Genetics professionals' distressing experiences in patient care.

Purpose: To explore specific patient care experiences that genetics professionals associate with distress and the emotions engendered by those experiences.Methods: We conducted semistructured telephone interviews with clinical geneticists, genetic counselors, and genetic nurses that focused on a single distressing experience.Results: Fourteen clinical geneticists, 25 genetic counselors, and 14 nurses were interviewed. We categorized the situations that interviewees associated with distressing patient care experiences into seven major types: patient/family decisions (27% of total situations), giving bad news (17%), colleague behavior (15%), end-of-life issues (12%), unintended outcomes (12%), difficult patients (8%), and injustice/inhumanity (8%). Interviewees reported experiencing a variety of negative emotions during these situations, including anger, guilt, helplessness, and inadequacy.Conclusions: The distress and resulting emotions experienced by genetic service providers must be acknowledged. Interventions are needed to assist the clinician in becoming self-aware by reflecting on experienced emotions, examining belief systems and values, and understanding the connection between their emotions and behavior. Involvement in mindfulness meditation, reflective writing, peer support groups or additional communication skill-based training could address this need. In addition, clinicians should seek ways to increase personal meaning derived from providing patient care.