Kathleen Turner

The Practice of Respect in the ICU

Abstract Although “respect” and “dignity” are intuitive concepts, little formal work has addressed their systematic application in the ICU setting. After convening a multidisciplinary group of relevant experts, we undertook a review of relevant literature and collaborative discussions focused on the practice of respect in the ICU. We report the output of this process, including a summary of current knowledge, a conceptual framework, and a research program for understanding and improving the practice of respect and dignity in the ICU. We separate our report into findings and proposals. Findings include the following: 1) dignity and respect are interrelated; 2) ICU patients and families are vulnerable to disrespect; 3) violations of respect and dignity appear to be common in the ICU and overlap substantially with dehumanization; 4) disrespect may be associated with both primary and secondary harms; and 5) systemic barriers complicate understanding and the reliable practice of respect in the ICU. Proposals include: 1) initiating and/or expanding a field of research on the practice of respect in the ICU; 2) treating “failures of respect” as analogous to patient safety events and using existing quality and safety mechanisms for improvement; and 3) identifying both benefits and potential unintended consequences of efforts to improve the practice of respect. Respect and dignity are important considerations in the ICU, even as substantial additional research remains to be done.

A Clinician’s Guide to Privacy and Communication in the ICU

Objective: To review the legal issues concerning family members’ access to information when patients are in the ICU. Data Sources: U.S. Code, U.S. Code of Federal Regulations, and state legislative codes. Data Extraction: Relevant legal statutes and regulations were identified and reviewed by the two attorney authors (L. F., M. A. V.). Study Selection: Not applicable. Data Synthesis: Review by all coauthors. Conclusions: The Health Insurance Portability and Accountability Act and related laws should not be viewed as barriers to clinicians sharing information with ICU patients and their loved ones. Generally, under Health Insurance Portability and Accountability Act, personal representatives have the same authority to receive information that patients would otherwise have. Persons involved in the patient’s care also may be given information relevant to the episode of care unless the patient objects. ICUs should develop policies for handling the issues we identify about such information sharing, including policies for responding to telephone inquiries and methods for giving patients the opportunity to object to sharing information with individuals involved in their care. ICU clinicians also should be knowledgeable of their state’s laws about how to identify patients’ personal representatives and the authority of those representatives. Finally, ICU clinicians should be aware of any special restrictions their state places on medical information. In aggregate, these strategies should help ICU managers and clinicians facilitate robust communication with patients and their loved ones.

Measuring patient respect in the intensive care unit: Validation of the ICU-RESPECT instrument

Purpose: To validate a brief index of patient and family experiences of respect in the intensive care unit. Material and methods: A survey including the 10‐item ICU‐RESPECT scale was administered to patients and family members in one ICU at a large west coast academic medical center. Confirmatory psychometric analyses were conducted. Results: Based on 142 completed surveys, factor analysis confirmed a unidimensional scale with an alpha of 0.90, an Eigen value of 4.9, and factor loadings from 0.50 to 0.86. The mean total score was 7.59 (SD = 3.06) out of a maximum of 10. Among the 106 surveys that included demographics, overall scores did not differ by type of respondent (patient or family) or by gender. There were modest differences in overall scores by patient race. Two individual items differed by type of respondent. Conclusions: The ICU‐RESPECT index demonstrates reliability and concurrent validity in a different ICU setting from the one where the index was developed. Future research should assess the scales predictive validity, and factors associated with variation in scores. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment. HIGHLIGHTSThe psychometric properties of the 10‐item self‐reported “ICU‐RESPECT” index were confirmed in a second ICU setting.The ICU‐RESPECT index is unidimensional with an alpha of 0.90, an Eigen value of 4.9, and a mean total score of 7.59 out of 10.The “ICU‐RESPECT” index can be used to develop and evaluate educational interventions to counteract disrespectful treatment of patients and families in the ICU.

561: ENGAGING AN ICU PATIENT AND FAMILY ADVISORY COUNCIL TO REDESIGN A PATIENT-ORIENTED WEBSITE

Learning Objectives: Patients and their families are inundated with information at the time of ICU admission. As part of a large quality improvement project (Emerge), we created a web-based educational resource for patients and families to help them better understand the ICU and empower them to be more engaged in their care. In order to optimize this resource, we sought feedback from a patient and family advisory council (PFAC). The process of using a PFAC to guide the development of such a resource has not been previously described. Methods: After developing and publishing web-based, patient-oriented content based on previous research describing the information needs of patients and families in the ICU, we met with the 11-member adult ICU PFAC to review the website utilizing a user-experience focus group model. In a two-hour session, PFAC members provided feedback about the usability of the website while reflecting on their real-life experiences in the ICU. Member comments were analyzed to identify common themes and opportunities for improvement. Results: Four key areas of improvement were identified: organization, content, layout, and voice. As a result, we made substantive changes to the site, including a reorganization that made patient experience the primary focus. We restructured content chronologically to match the ICU admission, ongoing treatment, and transition-out-ofICU periods, and care partners became the site’s intended audience. New content also was developed to highlight practical information germane to a patient’s hospitalization, and the site’s tone was amended to address the true partner role patients and their family members have with providers in health care. Conclusions: Inclusion of feedback from the PFAC via a user-experience focus group had a meaningful impact on our final website. We gained critical insights that would not have otherwise been implemented despite the website’s creation by a trans-disciplinary team of ICU clinicians. Our findings have significant implications for future development of health IT resources for patients and their care partners.

345: BARRIERS TO PROVIDING QUALITY END OF LIFE CARE IN THE ICU RESULTS OF A MULTICENTER SURVEY

Crit Care Med 2015 • Volume 43 • Number 12 (Suppl.) quality and 3 of poor quality. The patients who had a PC consultation in the ICU, when compared to the ones who did not, showed a trend towards reduction in ICU and hospital LOS. This was statistically significant in the high quality studies. Mortality outcomes were similar in both patient groups. PC consultations also lead to a significant reduction in ICU and total hospital costs in 5 of the 8 eligible trials. Using weighted means, ICU costs were (control vs PC)

Defining patient and family engagement in the intensive care unit.

7533 vs

Communicating with Patients’ Families and Physicians About Prognosis and Goals of Care

6406 (p<0.001) and hospital costs were

Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit

9518 vs

ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

8971 (p<0.001). No meta-analysis was done due to interstudy heterogeneity. Conclusions: This review shows a trend that PC consultations in the ICU reduce LOS and cost of care with no impact on mortality. However, due to small sample sizes and varying quality of evidence, many questions are left unanswered. A large multicenter randomized trial and formal economic evaluation would be needed to evaluate the effect of a proactive PC approach on ICU LOS and cost.