Rebecca A. Aslakson

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.

Nurse-Perceived Barriers to Effective Communication Regarding Prognosis and Optimal End-of-Life Care for Surgical ICU Patients: A Qualitative Exploration

BACKGROUND Integration of palliative care for intensive care unit (ICU) patients is important but often challenging, especially in surgical ICUs (SICUs), in part because many surgeons equate palliative care with terminal care and failure of restorative care. SICU nurses, who are key front-line clinicians, can provide insights into barriers for delivery of optimal palliative care in their setting. METHODS We developed a focus group guide to identify barriers to two key components of palliative care-optimal communication regarding prognosis and optimal end-of-life care-and used the tool to conduct focus groups of nurses providing bedside care in three SICUs at a tertiary care, academic, inner city hospital. Using content analysis technique, responses were organized into thematic domains that were validated by independent observers and a subset of participating nurses. RESULTS Four focus groups included a total of 32 SICU nurses. They identified 34 barriers to optimal communication regarding prognosis, which were summarized into four domains: logistics, clinician discomfort with discussing prognosis, inadequate skill and training, and fear of conflict. For optimal end-of-life care, the groups identified 24 barriers in four domains: logistics, inability to acknowledge an end-of-life situation, inadequate skill and training, and cultural differences relating to end-of-life care. CONCLUSIONS Nurses providing bedside care in SICUs identify barriers in several domains that may impede optimal discussions of prognoses and end-of-life care for patients with surgical critical illness. Consideration of these perceived barriers and the underlying SICU culture is relevant for designing interventions to improve palliative care in this setting.

Surgical intensive care unit clinician estimates of the adequacy of communication regarding patient prognosis

IntroductionIntensive care unit (ICU) patients and family members repeatedly note accurate and timely communication from health care providers to be crucial to high-quality ICU care. Practice guidelines recommend improving communication. However, few data, particularly in surgical ICUs, exist on health care provider opinions regarding whether communication is effective.MethodsTo evaluate ICU clinician perceptions regarding adequacy of communication regarding prognosis, we developed a survey and administered it to a cross section of surgical ICU nurses, surgical ICU physicians, nurse practitioners (NPs), and surgeons.ResultsSurgeons had a high satisfaction with communication regarding prognosis for themselves (90%), ICU nurses (85%), and ICU physicians and NPs (85%). ICU nurses noted high satisfaction with personal (82%) and ICU physician and NP (71%) communication, but low (2%) satisfaction with that provided by surgeons. ICU physicians and NPs noted high satisfaction with personal (74%) and ICU nurse (88%) communication, but lower (23%) satisfaction with that provided by surgeons. ICU nurses were the most likely (75%) to report speaking to patients and patient families regarding prognosis, followed by surgeons (40%), and then ICU physicians and NPs (33%). Surgeons noted many opportunities to speak to ICU nurses and ICU physicians and NPs about patient prognosis and noted that comments were often valued. ICU physicians and NPs and ICU nurses noted many opportunities to speak to each other but fewer opportunities to communicate with surgeons. ICU physicians and NPs thought that their comments were valued by ICU nurses but less valued by surgeons. ICU nurses thought that their comments were less valued by ICU physicians and NPs and surgeons.ConclusionsICU nurses, surgeons, and ICU intensivists and NPs varied widely in their satisfaction with communication relating to prognosis. Clinician groups also varied in whether they thought that they had opportunities to communicate prognosis and whether their concerns were valued by other provider groups. These results hint at the nuanced and complicated relationships present in surgical ICUs. Further validation studies and further evaluations of patient and family member perspectives are needed.

Assessing the impact of palliative care in the intensive care unit through the lens of patient-centered outcomes research

Purpose of reviewProfessional organizations, consensus groups, and stakeholders are calling for better palliative care in acute care settings, particularly in ICUs. Our ability to deliver that care is dependent on the outcomes associated with palliative care in the ICU. This review provides a conceptual framework for these outcomes, discusses current and future challenges for work in this field, and advocates for better use of patient-centered outcomes in future studies. Recent findingsPrevious studies of palliative care interventions in the ICU have used heterogeneous outcomes, conceptualized as: systems-related, content-related, clinician-related, or patient/family-related. Few outcomes were used in multiple studies and many studies had insufficient power and questionable generalizability and impact. Although nearly all previous studies incorporated family-related outcomes, not one incorporated patient-centered outcomes, such as health-related quality of life, patient symptom score, or consensus between patient goals and care provided. SummaryDelivery of palliative care in the ICU will be hampered until studies incorporate outcomes that are: responsive to and reflective of variations in care, and multi-faceted (with patient-centered components) to reflect the multi-dimensional nature of palliative care and the varied needs of different stakeholders.

Continuity, Coordination, and Transitions of Care for Patients with Serious and Advanced Illness: A Systematic Review of Interventions

OBJECTIVES Continuity, coordination, and transitions of care are key to high-quality medical care for patients with serious and advanced illness. We conducted a systematic review to evaluate the impact of interventions targeting these areas in this population. METHODS We searched PubMed, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through 2011. We included prospective controlled studies targeting continuity, coordination, and transitions for patients with advanced illness that reported patient centered outcomes. Of 13,014 citations, 23 studies met inclusion criteria. Two investigators extracted and checked data on population, interventions, methods, outcomes, and methodological quality. RESULTS Four of the six studies evaluating patient satisfaction (67%) and four of the six studies evaluating caregiver satisfaction (67%) showed statistically significant improvements in these outcomes in the intervention compared to the control group. Only three of the nine studies (33%) measuring quality of life and five of the 16 (31%) measuring health care utilization showed improvement. Results were similar across different types of interventions. CONCLUSIONS Many studies were limited by methodologic issues such as use of measurement tools not developed for patients with advanced disease and small sample size. Interventions and outcomes were too heterogeneous for meta-analysis. We found moderate evidence that interventions targeting continuity, coordination, and transitions in patients with advanced and serious illness improve patient and caregiver satisfaction, but low evidence for other outcomes. Further research is needed on how to target these domains for outcomes such as health care utilization.

An Environmental Scan of Advance Care Planning Decision Aids for Patients Undergoing Major Surgery: A Study Protocol

BackgroundPatients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families.ObjectiveThe purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery.Methods/designThis study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids.DiscussionThis environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.

Methods for Improving the Quality of Palliative Care Delivery: A Systematic Review

Background: The effectiveness for improving the outcomes across palliative care domains remains unclear. We conducted a systematic review of different types of quality improvement interventions relevant to palliative care. Methods: We searched PubMed, CINAHL, PsycINFO, and Cochrane for relevant articles published between 2000 and 2011. Results: A total of 10 randomized controlled trials and 7 nonrandomized controlled trials were included. Of the 5 studies using relay of clinical information, 1 reported significant improvement in patient quality of life. Of the 5 studies targeting education and self-management, 4 found significant improvements in quality of life or patient symptoms. Conclusion: A minority of quality improvement interventions have succeeded in improving the quality of palliative care delivery. More studies are needed on specific quality improvement types, including organizational change and multiple types of interventions.

Health Care Quality in End-of-Life Care: Promoting Palliative Care in the Intensive Care Unit

Seminal articles published in the late 1990s instigated not only an intense interest in health care quality but also a new era of research into quality end-of-life care, particularly in intensive care units (ICUs). ICUs can improve health care quality at the end of life by better using palliative care services and palliative care-related principles. This article details how the interest in health care quality has spurred a similar interest in end-of-life and palliative care in ICUs, defines palliative care and describes how it improves health care quality, and highlights barriers to the incorporation of palliative care in ICUs.

Concordance of Advance Care Plans With Inpatient Directives in the Electronic Medical Record for Older Patients Admitted From the Emergency Department

CONTEXT Measuring What Matters identified quality indicators to examine the percentage of patients with documentation of a surrogate decision maker and preferences for life-sustaining treatments. OBJECTIVES To determine the rate of advance care planning in older adults presenting to the emergency department (ED) and translation into medical directives in the electronic medical record (EMR). METHODS A convenience sample of adults 65 years or older was recruited from a large urban ED beginning in January 2012. We administered a baseline interview and survey in English or Spanish, including questions about whether patients had a documented health care proxy or living will. For patients admitted to the hospital who had a health care proxy or living will, chart abstraction was performed to determine whether their advance care preferences were documented in the EMR. RESULTS From February 2012 to May 2013, 53.8% (367 of 682) of older adults who completed the survey in the ED reported having a health care proxy, and 40.2% (274 of 682) had a living will. Of those admitted to the hospital, only 4% (4 of 94) of patients who said they had a living will had medical directives documented in the EMR. Similarly, only 4% (5 of 115) of patients who had a health care proxy had the persons name or contact information documented in their medical record. CONCLUSION About half of the patients 65 years or older arriving in the ED have done significant advance care planning, but most plans are not recorded in the EMR.

A Systematic Review of Health Care Interventions for Pain in Patients With Advanced Cancer

Purpose: Poorly controlled pain is common in advanced cancer. The objective of this article was to synthesize the evidence on the effectiveness of pain-focused interventions in this population. Methods: We searched MEDLINE, CINAHL, PsycINFO, Cochrane, and DARE from 2000 through December 2011. We included prospective, controlled health care intervention studies in advanced cancer populations, focusing on pain. Results: Nineteen studies met the inclusion criteria; most focused on nurse-led patient-centered interventions. In all, 9 (47%) of the 19 studies found a significant effect on pain. The most common intervention type was patient/caregiver education, in 17 (89%) of 19 studies, 7 of which demonstrated a significant decrease in pain. Conclusions: We found moderate strength of evidence that pain in advanced cancer can be improved using health care interventions, particularly nurse-led patient-centered interventions.