Ann C. Long

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.

Estimating the Effect of Palliative Care Interventions and Advance Care Planning on Icu Utilization: A Systematic Review*

Objective: We conducted a systematic review to answer three questions: 1) Do advance care planning and palliative care interventions lead to a reduction in ICU admissions for adult patients with life-limiting illnesses? 2) Do these interventions reduce ICU length of stay? and 3) Is it possible to provide estimates of the magnitude of these effects? Data Sources: We searched MEDLINE, EMBASE, Cochrane Controlled Clinical Trials, and Cumulative Index to Nursing and Allied Health Literature databases from 1995 through March 2014. Study Selection: We included studies that reported controlled trials (randomized and nonrandomized) assessing the impact of advance care planning and both primary and specialty palliative care interventions on ICU admissions and ICU length of stay for critically ill adult patients. Data Extraction: Nine randomized controlled trials and 13 nonrandomized controlled trials were selected from 216 references. Data Synthesis: Nineteen of these studies were used to provide estimates of the magnitude of effect of palliative care interventions and advance care planning on ICU admission and length of stay. Three studies reporting on ICU admissions suggest that advance care planning interventions reduce the relative risk of ICU admission for patients at high risk of death by 37% (SD, 23%). For trials evaluating palliative care interventions in the ICU setting, we found a 26% (SD, 23%) relative risk reduction in length of stay with these interventions. Conclusions: Despite wide variation in study type and quality, patients who received advance care planning or palliative care interventions consistently showed a pattern toward decreased ICU admissions and reduced ICU length of stay. Although SDs are wide and study quality varied, the magnitude of the effect is possible to estimate and provides a basis for modeling impact on healthcare costs.

Posttraumatic stress disorder among survivors of critical illness: creation of a conceptual model addressing identification, prevention, and management

Quality of life is frequently impaired among survivors of critical illness, and psychiatric morbidity is an important element contributing to poor quality of life in these patients. Among potential manifestations of psychiatric morbidity following critical illness, symptoms of posttraumatic stress are prevalent and intricately linked to the significant stressors present in the intensive care unit (ICU). As our understanding of the epidemiology of post-ICU posttraumatic stress disorder improves, so must our ability to identify those at highest risk for symptoms in the period of time following critical illness and our ability to implement strategies to prevent symptom development. In addition, a focus on strategies to address clinically apparent psychiatric morbidity will be essential. Much remains to be understood about the identification, prevention, and management of this significant public health problem. This article addresses the importance of uniformity in future epidemiologic studies, proposes framing of risk factors into those likely to be modifiable versus non-modifiable, and provides an assessment of modifiable risk factors in the context of a novel conceptual model that offers insight into potential strategies to attenuate symptoms of posttraumatic stress among survivors of critical illness.

The epidemic of physician-family conflict in the ICU and what we should do about it.

www.ccmjournal.org 461 The ICU is a stressful environment where difficult and emotionally charged discussions occur on a daily basis; it is no wonder then that perceptions of conflict are so common in critical care settings (1, 2). Although variability in perception of conflict among ICU clinicians has been documented (3), there is limited information addressing the relationship between physician and family perspectives about conflict. In this issue of Critical Care Medicine, Schuster et al (4) investigate the degree of agreement between physicians and family members regarding conflict in the ICU and identify predictors of physician-family conflict. In this observational study, family members and primary ICU physicians of incapacitated, critically ill patients were identified and asked to complete a questionnaire concerning physician-family conflict and describe their views of physicians’ and families’ roles. Family members also provided information about the quality of physician communication and satisfaction with the physician’s bedside manner. Conflict was reported by either physicians or surrogates in 63% of cases, suggesting conflict is present in our ICUs in epidemic proportions. Importantly, physicians reported conflict less frequently than family members and concordance between physician and family reports of conflict was extremely poor. In fact, agreement between physicians and family on whether there was conflict approached the accuracy of flipping a coin. This did not improve when the authors focused on high conflict (≥ 5 on a 0–10 scale). The results of this study are informative and document significant differences in the experiences of physicians and family members. Although concerted efforts to improve communication and clarify goals of care have been recommended to promote conflict resolution in the ICU (5), the success of any intervention is dependent on the ability of the clinical team to recognize that conflict exists. The observed discordance between physician and family perceptions should heighten physician awareness of the potential for unaddressed conflict and should prompt physicians to inquire about unspoken family concerns. Investigation of conflict should involve other members of the ICU team, not just physicians and family. Conflicts often arise in the setting of decisions about withholding and withdrawing life-sustaining therapies (3) and important differences have been reported between physician, nurse, and resident evaluations of the quality of end-of-life care in the ICU (6). The entire ICU team should be involved in the evaluation of potential conflict, viewing identification of conflict as an opportunity to address both family and intrateam concerns. Another important issue raised by this study involves the nature of conflict and begs the following question: Is all conflict undesirable? Although there is evidence to support the beneficial effects of constructive conflict on interpersonal development (7), most conflict described in the medical literature has been associated with adverse, not positive outcomes (8, 9), and few studies have described associations between conflict and family outcomes in the ICU (10, 11). However, associations between conflict and adverse clinical outcomes do not necessarily clarify the effects of conflict itself and may instead reflect the impact of participant response to conflict. The occurrence of conflict in critical care settings is inevitable, and it is likely that physician and family perceptions of the management of conflict are equally or more important than conflict recognition. This study provides valuable information about the measurement of conflict in the ICU and supports the need for further research to better characterize the effects of conflict management on patient and family outcomes (4). The finding that family satisfaction with physician’s bedside manner was associated with conflict is not surprising but helps identify future directions. Although there is no consensus on the characteristics that define a “good” bedside manner, it is likely that a significant component of satisfaction with a physician’s interaction with patients and families is the quality of communication they provide. Expressions of empathy and assurances that a patient will not be abandoned before death have been associated with higher family satisfaction in the ICU (12, 13) and may also be important factors in avoiding, attenuating, and addressing conflict. The results from this study suggest that exploration of specific elements of clinician communication and behavior may provide key insights into methods to reduce and resolve conflict in the ICU. There have been a number of intervention studies demonstrating an association between improved clinician-family communication in the ICU and reductions in ICU length of stay for patients who die. Such interventions include routine palliative care or ethics consults and routine, early family Copyright

The Influence of Race/Ethnicity and Education on Family Ratings of the Quality of Dying in the ICU

CONTEXT Racial and ethnic differences in end-of-life care may be attributable to both patient preferences and health-care disparities. Identifying factors that differentiate preferences from disparities may enhance end-of-life care for critically ill patients and their families. OBJECTIVES To understand the association of minority race/ethnicity and education with family ratings of the quality of dying and death, taking into consideration possible markers of patient and family preferences for end-of-life care as mediators of this association. METHODS Data were obtained from 15 intensive care units participating in a cluster-randomized trial of a palliative care intervention. Family members of decedents completed self-report surveys evaluating quality of dying. We used regression analyses to identify associations between race/ethnicity, education, and quality of dying ratings. We then used path analyses to investigate whether advance directives and life-sustaining treatment acted as mediators between patient characteristics and ratings of quality of dying. RESULTS Family members returned 1290 surveys for 2850 decedents. Patient and family minority race/ethnicity were both associated with lower ratings of quality of dying. Presence of a living will and dying in the setting of full support mediated the relationship between patient race and family ratings; patient race exerted an indirect, rather than direct, effect on quality of dying. Family minority race had a direct effect on lower ratings of quality of dying. Neither patient nor family education was associated with quality of dying. CONCLUSION Minority race/ethnicity was associated with lower family ratings of quality of dying. This association was mediated by factors that may be markers of patient and family preferences (living will, death in the setting of full support); family member minority race/ethnicity was directly associated with lower ratings of quality of dying. Our findings generate hypothesized pathways that require future evaluation.

Family-centered outcomes during and after critical illness: current outcomes and opportunities for future investigation.

Purpose of reviewFamily-centered outcomes during and after critical illness assess issues that are most important to family members. An understanding of family-centered outcomes is necessary to support the provision of family-centered care and to foster development of interventions to improve care and communication in the ICU. Recent findingsCurrent family-centered outcomes in critical care include satisfaction with care, including end-of-life care, symptoms of psychological distress, and health-related quality of life. Novel measures include assessments of decisional conflict, decision regret, therapeutic alliance, and caregiver burden, as well as positive adaptations and resilience. SummaryCritical illness places a significant burden on family members. A wide variety of family-centered outcomes are available to guide improvements in care and communication. Future research should focus on developing sensitive and responsive measures that capture key elements of the family member experience during and after critical illness.

Quality of dying in the ICU: understanding ways to make it better.

Dear Editor, We appreciate the comments on our work from Gifford and Esquinas [1]. We believe that our study [2] adds to the field by identifying patients arriving to the ICU from the hospital ward as a group at high risk for poor quality palliative and end-of-life care. The factors influencing the association between ICU admission from the hospital ward and lower family ratings of care and quality of dying are likely myriad and complex. As Gifford and Esquinas point out, patients arriving from the hospital ward may differ from patients admitted to the ICU from the emergency department in a number of important ways. The length of time spent on the hospital ward, the patient’s admitting diagnosis, and the characteristics surrounding transfer to the ICU all likely contribute to family member expectations for their loved one’s care. These factors are important considerations when assuming the care of patients arriving in the ICU from the hospital ward, and more research is needed to understand how these various factors might influence family member experiences. We agree that it is concerning that for both groups of patients, discussions of prognosis were documented so infrequently, particularly because all patients in this cohort died. The reasons why the family members of patients from the hospital ward were less likely to have family conferences or discussions of prognosis documented in the first 72 h of ICU admission are unclear and this important finding warrants further investigation. Although some may argue that family members of patients arriving from the emergency department require more intensive communication, it seems difficult to support this notion given the severity of illness observed in patient’s arriving to the ICU from the hospital ward [3, 4]. Even if conferences for family of patients arriving from the emergency department were believed to be more pressing, it seems unreasonable that family of patients admitted from the hospital ward should wait more than 3 days to have a family conference. We also agree that a focus on improving transitions in care is warranted. Assessment of rapid response teams in decisions surrounding inpatient transfers suggests that even in time-sensitive situations, clinicians can still incorporate family in medical decision-making [5]. Transitions in care represent important events for hospitalized patients and their family, and a better understanding of barriers to high-quality transitions is needed to inform interventions to improve the quality of care provided to these critically ill patients and their family.

Enhancing informed decision making: is more information always better?

In order for patients and their surrogates to be fully engaged in the process of shared decision-making, they must receive adequate information about proposed treatment plans and interventions. The absence of such knowledge may rob patients and their family members of the ability to make informed decisions or align treatment preferences with patient care. This lack of information becomes even more troubling when it involves interventions such as cardiopulmonary resuscitation (CPR), as uninformed decisions about resuscitation may lead to the provision or withholding of life-extending therapies in a way that is not consistent with a patient’s goals. Unfortunately, deficiencies in CPR education are abundant [1]. In this issue of Critical Care Medicine, Wilson and colleagues [2] evaluate the role of a video to improve patient and surrogate understanding of CPR choices in the intensive care unit (ICU). In this randomized controlled trial, critically ill patients and surrogate decision-makers for incapacitated patients in the ICU were randomized to receive either usual care, which consisted of a 16-page pamphlet describing CPR and CPR preference options as well as routine non-standardized code status discussions with ICU clinicians, or usual care plus an 8-minute video describing CPR and CPR preference options. Participant knowledge of CPR and CPR choices was assessed and those in the video group demonstrated significantly better understanding of CPR, including treatments used in CPR, the purpose of CPR, and the meaning of “code status”. The majority of participants in the video group reported feeling comfortable watching the video and also felt the video helped them understand their options. Given the importance of providing adequate information to patients and their family members about disease processes, prognosis, and potential medical interventions, it is tempting to believe that the provision of more information is the answer. The reality, however, is that more information is not necessarily better. The manner in which the information is shared is also a crucial component of successful education. Many factors influence the ability to comprehend and process medical information, including health literacy, learning styles, and the quality of communication provided. Health literacy, in particular, may represent a significant barrier to informed decision-making for some patients and their family members. Low health literacy may impair comprehension of information about diagnosis and prognosis, and thus lead to uncertainty in decision-making. It is promising, however, that patient education through video tools may attenuate uncertainty related to low health literacy [3]. The use of multimedia educational tools, including both written material and video, may address limitations of written and visual information when each is used in isolation. As in this study and in others assessing the ability of video to enhance knowledge, the combination of video and written information, when well-designed, can improve patient and surrogate understanding of medical information [2, 4–6]. If adequate information is able to promote informed decision-making, then it may also affect which decisions patients and their family members make. In prior studies, the introduction of a videos addressing advance care planning and end-of-life preferences have been associated with significant changes in patient preferences regarding end-of-life care [4, 6–8]. In the study by Wilson and colleagues, changes in CPR utilization and change in DNR code status were not identified. However, as the authors note, this study was not powered to detect such changes. More information is needed to know how the introduction of educational videos in the hospital environment might affect decision-making over time. Ideally, patients and their family members would have access to both written material and video in inpatient and outpatient environments in order to facilitate a sustained understanding of CPR options that they might later use to make healthcare decisions. In addition to understanding whether educational interventions change treatment preferences, it is also important to understand how those preferences change. Trials including video tools have noted a shift from preferences for more intensive care to less intensive care at the end of life after provision of video information [4, 6–8]. This shift in preferences may represent an improved understanding of CPR and other interventions at the end-of-life, but it is important to remain cognizant of changes that may occur with the introduction of educational tools. The goal of patient and surrogate education is to support the ability to make informed decisions and not to promote one set of treatment decisions over another. Given the potential for bias or inappropriate persuasion, video materials must be carefully made and, as noted in this study, production of a high-quality video can be quite costly. As more educational videos are generated, it will behoove the critical care community to identify videos that balance potential treatment options carefully and provide accurate information for patients and their family members. Otherwise, there is potential to introduce biased information that may be misleading for patients and their families. In the context of improving patient and family understanding to support decision-making, it is important to note that the desire for more information and the desire for involvement in decision-making are not always congruent. The vast majority of family members of critically ill patients want information, but their desired role in decision-making ranges from wanting to be the sole decision-maker, to wanting physicians to make all decisions [9, 10]. The distribution across this spectrum of decision-making preference may vary by country and region, but a distribution has been found in all studies to date, including those done in North America, South America, and Europe [9–12]. Importantly, our ability to match our approach to decision-making to family preference appears to be associated with a reduction in symptoms of post-traumatic stress disorder [13]. Therefore, it is important that we incorporate patient and family preference into our approach both to providing information and to conducting decision-making. Patient and surrogate education about the risks and benefits of potential interventions should be a primary objective of all clinicians caring for patients facing serious or life-threatening illness. Many types of educational materials may be made available to patients and their family members, but as this study and others have shown, the armamentarium used to provide information can and should be more encompassing than written materials. If the goal is to support informed patient- and family-centered decision-making, then clinicians may be better able to do so by embracing a multimedia approach to the education of patients and their family. Further research is needed to evaluate the use of video in the inpatient setting as a tool to improve CPR education and assist clinicians in identifying patient and family member preferred decision-making roles, but results such as these offer promise in the continued effort to support informed decision-making in the ICU.

Physicians' decision-making roles for critically ill patients: what is the "right" approach?*.

XXX although marketed for varying purposes, can be like well-designed EMRs, which show the potential to improve quality and efficiency (9, 10). Developers may be at the vanguard and serve as drivers toward faster recognition of the patient at risk and portend the possibility of a data dashboard for a critically ill/injured patient. Studies such as by Pickering et al and results yet to be demonstrated by the above dashboard scoring systems will help define, shape, and mold the critical care datamanagement marketplace. With development and ongoing research, archetypal dashboards in the future ICU will help support excellent and timely decisions for safer and higher quality patient care. As healthcare evolves in conjunction with the EMR, the enduring problem of clinical information overload will continue to challenge our paradigm, and how we manage it going forward needs to be novel, save time, and most importantly, improve patient outcomes.