Douglas B. White

Practical Guidance for Evidence-Based ICU Family Conferences

Because most critically ill patients lack decision-making capacity, physicians often ask family members to act as surrogates for the patient in discussions about the goals of care. Therefore, clinician-family communication is a central component of medical decision making in the ICU, and the quality of this communication has direct bearing on decisions made regarding care for critically ill patients. In addition, studies suggest that clinician-family communication can also have profound effects on the experiences and long-term mental health of family members. The purpose of this narrative review is to provide a context and rationale for improving the quality of communication with family members and to provide practical, evidence-based guidance on how to conduct this communication in the ICU setting. We emphasize the importance of discussing prognosis effectively, the key role of the integrated interdisciplinary team in this communication, and the importance of assessing spiritual needs and addressing barriers that can be raised by cross-cultural communication. We also discuss the potential value of protocols to encourage communication and the potential role of quality improvement for enhancing communication with family members. Last, we review issues regarding physician reimbursement for communication with family members within the context of the US health-care system. Communication with family members in the ICU setting is complex, and high-quality communication requires training and collaboration of a well-functioning interdisciplinary team. This communication also requires a balance between adhering to processes of care that are associated with improved outcomes and individualizing communication to the unique needs of the family.

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.

Noninvasive positive pressure ventilation in critical and palliative care settings: understanding the goals of therapy.

Objective:Although noninvasive positive pressure ventilation (NPPV) is a widely accepted treatment for some patients with acute respiratory failure, the use of NPPV in patients who have decided to forego endotracheal intubation is controversial. Therefore, the Society of Critical Care Medicine charged this Task Force with developing an approach for considering use of NPPV for patients who choose to forego endotracheal intubation. Data Sources and Methods:The Task Force met in person once, by conference call twice, and wrote this document during six subsequent months. We reviewed English-language literature on NPPV for acute respiratory failure. Synthesis and Overview:The use of NPPV for patients with acute respiratory failure can be classified into three categories: 1) NPPV as life support with no preset limitations on life-sustaining treatments, 2) NPPV as life support when patients and families have decided to forego endotracheal intubation, and 3) NPPV as a palliative measure when patients and families have chosen to forego all life support, receiving comfort measures only. For each category, we reviewed the rationale and evidence for NPPV, key points to communicate to patients and families, determinants of success and failure, appropriate healthcare settings, and alternative approaches if NPPV fails to achieve the original goals. Conclusions:This Task Force suggests an approach to use of NPPV for patients and families who choose to forego endotracheal intubation. NPPV should be applied after careful discussion of the goals of care, with explicit parameters for success and failure, by experienced personnel, and in appropriate healthcare settings. Future studies are needed to evaluate the clinical outcomes of using NPPV for patients who choose to forego endotracheal intubation and to examine the perspectives of patients, families, and clinicians on use of NPPV in these contexts.

Prognostication during physician-family discussions about limiting life support in intensive care units.

Objective:Prognostic information is important to the family members of incapacitated, critically ill patients, yet little is known about what prognostic information physicians provide. Our objectives were to determine the types of prognostic information provided to families of critically ill patients when making major end-of-life treatment decisions and to identify factors associated with more physician prognostication. Design:Multiple-center, cross-sectional study. Setting:ICUs of four hospitals. Subjects:Thirty-five physicians, 51 patients, and 169 family members. Interventions:We audiotaped 51 physician-family conferences in which there were deliberations about major end-of-life treatment decisions at four hospitals in 2000–2002. Conferences were coded to identify the types of prognostic information provided by physicians. We used a mixed-effects regression model to identify factors associated with more prognostication by physicians. Measurements and Main Results:The mean number of prognostic statements per conference was 9.4 ± 6.4 (range 0–29). Eighty-six percent of conferences contained discussion of the patient’s anticipated functional status or quality of life, compared with 63% in which the chances for survival were discussed (p = .01). There were significantly more statements about prognosis for functional outcomes per conference compared with statements about prognosis for survival (median 4 [interquartile range 2–8] vs. 1 [interquartile range 0–3]; p < .001). Increasing educational level of the family was independently associated with more prognostic statements by physicians (p < .001) as was the degree of physician-family conflict about withdrawing life support (p < .001) and the physician’s race being white (p = .009). Conclusions:Prognostication occurred frequently during physician-family deliberations about whether to forego life support, but physicians did not discuss the patient’s prognosis for survival in more than one third of conferences. Less educated families received less information about prognosis. Future studies should address whether these observations partially explain the high prevalence of family misunderstandings about prognosis in intensive care units.

Symptom experiences of family members of intensive care unit patients at high risk for dying

Objective:To describe the symptom experiences of family members of patients at high risk for dying in the intensive care unit and to assess risk factors associated with higher symptom burden. Design:Prospective, cross-sectional study. Setting:Three intensive care units at a large academic medical center. Participants:A sample of 74 family members of 74 intensive care unit patients who had a grave prognosis and were judged to be at high risk for dying. Patients at high risk for dying were identified as having Acute Physiology and Chronic Health Evaluation II scores >20, an intensive care unit length of stay >72 hrs, and being mechanically ventilated. Interventions:None. Measurements and Results:We assessed the degree of symptom burden approximately 4 days after the patients admission to the intensive care unit in the following domains: traumatic stress, anxiety, and depression. Overall, the prevalence of symptoms was high, with more than half (57%) of family members having moderate to severe levels of traumatic stress, 80% having borderline symptoms of anxiety, and 70% having borderline symptoms of depression. More than 80% of family members had other physical and emotional symptoms, such as fatigue, sadness, and fear, and these were experienced at the moderate to severe levels of distress. Factors independently associated with greater severity of symptoms included younger age, female gender, and non-white race of the family member. The only patient factor significantly associated with symptom severity was younger age. Despite their symptom experience, the majority of the family members were coping at moderate to high levels and functioning at high levels during the intensive care unit experience. Conclusions:We document a high prevalence of psychological and physical symptoms among family members during an intensive care unit admission. These data complement existing data on long-term symptom burden and highlight the need to improve family centered care in intensive care units.

It's not just what the doctor tells me: factors that influence surrogate decision-makers' perceptions of prognosis.

Objective:Physicians and surrogate decision-makers for seriously ill patients often have different views of patients’ prognoses. We sought to understand what sources of knowledge surrogates rely on when estimating a patient’s prognosis. Design:Prospective, mixed-methods study using face-to-face, semistructured interviews with surrogate decision-makers. Setting:Four intensive care units at the University of California, San Francisco Medical Center in 2006 to 2007. Participants:Participants were 179 surrogate decision-makers for 142 incapacitated, critically ill patients at high risk for death. Main Results:Less than 2% (3 of 179) of surrogates reported that their beliefs about the patients’ prognoses hinged exclusively on prognostic information provided to them by physicians. The majority cited other factors in addition to physicians’ predictions that also contributed to their beliefs about the patients’ prognoses, including perceptions of the patient’s individual strength of character and will to live; the patient’s unique history of illness and survival; the surrogate’s own observations of the patient’s physical appearance; the surrogate’s belief that their presence at the bedside may improve the prognosis; and the surrogate’s optimism, intuition, and faith. For some surrogates, these other sources of knowledge superseded the importance of the physician’s prognostication. However, most surrogates endeavored to balance their own knowledge of the patient with physicians’ biomedical knowledge. Conclusions:Surrogates use diverse types of knowledge when estimating their loved ones’ prognoses, including individualized attributes of the patient, such as their strength of character and life history, of which physicians may be unaware. Attention to these considerations may help clinicians identify and overcome disagreements about prognosis.

Empathy and Life Support Decisions in Intensive Care Units

BackgroundAlthough experts advocate that physicians should express empathy to support family members faced with difficult end-of-life decisions for incapacitated patients, it is unknown whether and how this occurs in practice.ObjectivesTo determine whether clinicians express empathy during deliberations with families about limiting life support, to develop a framework to understand these expressions of empathy, and to determine whether there is an association between more empathic statements by clinicians and family satisfaction with communication.DesignMulti-center, prospective study of audiotaped physician-family conferences in intensive care units of four hospitals in 2000–2002.MeasurementsWe audiotaped 51 clinician-family conferences that addressed end-of-life decisions. We coded the transcripts to identify empathic statements and used constant comparative methods to categorize the types of empathic statements. We used generalized estimating equations to determine the association between empathic statements and family satisfaction with communication.Main ResultsThere was at least one empathic statement in 66% (34/51) of conferences with a mean of 1.6 ± 1.6 empathic statements per conference (range 0–8). We identified three main types of empathic statements: statements about the difficulty of having a critically ill loved one (31% of conferences), statements about the difficulty of surrogate decision-making (43% of conferences), and statements about the difficulty of confronting death (27% of conferences). Only 30% of empathic statements were in response to an explicit expression of emotion by family members. There was a significant association between more empathic statements and higher family satisfaction with communication (p = 0.04).ConclusionsPhysicians vary considerably in the extent to which they express empathy to surrogates during deliberations about life support, with no empathic statements in one-third of conferences. There is an association between more empathic statements and higher family satisfaction with communication.

Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU.

Objective: To provide clinicians with evidence-based strategies to optimize the support of the family of critically ill patients in the ICU. Methods: We used the Council of Medical Specialty Societies principles for the development of clinical guidelines as the framework for guideline development. We assembled an international multidisciplinary team of 29 members with expertise in guideline development, evidence analysis, and family-centered care to revise the 2007 Clinical Practice Guidelines for support of the family in the patient-centered ICU. We conducted a scoping review of qualitative research that explored family-centered care in the ICU. Thematic analyses were conducted to support Population, Intervention, Comparison, Outcome question development. Patients and families validated the importance of interventions and outcomes. We then conducted a systematic review using the Grading of Recommendations, Assessment, Development and Evaluations methodology to make recommendations for practice. Recommendations were subjected to electronic voting with pre-established voting thresholds. No industry funding was associated with the guideline development. Results: The scoping review yielded 683 qualitative studies; 228 were used for thematic analysis and Population, Intervention, Comparison, Outcome question development. The systematic review search yielded 4,158 reports after deduplication and 76 additional studies were added from alerts and hand searches; 238 studies met inclusion criteria. We made 23 recommendations from moderate, low, and very low level of evidence on the topics of: communication with family members, family presence, family support, consultations and ICU team members, and operational and environmental issues. We provide recommendations for future research and work-tools to support translation of the recommendations into practice. Conclusions: These guidelines identify the evidence base for best practices for family-centered care in the ICU. All recommendations were weak, highlighting the relative nascency of this field of research and the importance of future research to identify the most effective interventions to improve this important aspect of ICU care.

The Epidemiology of Chronic Critical Illness in the United States

Objectives:The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Design:Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Setting:Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Patients:Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. Interventions:None. Measurements and Main Results:Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75–79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and

I don't want to be the one saying 'we should just let him die': intrapersonal tensions experienced by surrogate decision makers in the ICU.

26 billion in hospital-related costs. Conclusions:Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.