New Guidelines Promote More Family Engagement in Intensive Care Units

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Having a loved one go through a critical illness is a stressful and traumatic experience that may have lasting effects months after the patient is discharged from the intensive care unit (ICU). To improve the well-being of both patients and family during this vulnerable time, a set of new guidelines has been released, providing physicians with evidence-based strategies to optimize outcomes for the critically ill and those at their bedside.

The guidelines promoting family-centered care in neonatal, pediatric and adult ICUs were published in Critical Care Medicine and presented at the Society of Critical Care Medicine's (SCCM) 46th annual Critical Care Congress.

“There is increasing awareness that support for family can also improve patient outcomes,” said Judy Davidson, lead author of the guidelines and a nurse at UC San Diego Health. "Families in the ICU aren't visitors — they are an integral part of the care and the care team.”

Based on an analysis of more than 450 qualitative and quantitative studies, a multidisciplinary, international panel of 29 health care experts developed a series of recommendations for family-centered care, defined as an approach to health care that is respectful of and responsive to individual families' needs and values. The experiences and perspectives of former ICU patients and family members from UC San Diego Health, the University of Maryland (UOM) School of Medicine, patient advocacy organizations and the LGBTQ community were used to develop the new guidelines.   

The 23 recommendations grouped into five categories include: space for loved ones to sleep; educational programs to teach family how to assist with care; encouraging family members to be part of the decision-making process; implementing ICU diaries to reduce a family’s anxiety and post-traumatic stress; and involving a multi-disciplinary team, such as psychologists, social workers and spiritual advisors.

UC San Diego Health is among the first hospitals in the nation to embrace the concept of implementing a family diary in the ICUs.

“Structured interventions and approaches to support family members of critically ill patients are needed both to mitigate the impact of the crisis of critical illness and to prepare family members for decision-making and caregiving demands,” said Davidson. “Up to half of families with a critically ill loved one experience psychological symptoms. A robust program built around family-centered care may decrease the negative impact surrounding critical illness. It is a matter of public health.”

The guidelines suggest that clinicians and institutions need to decide which intervention or combination of interventions are likely to be the most successful in specific circumstances.

“We have developed a self-analysis tool that ICUs can use to build a customized family-centered plan that will bring change,” said Robert El-Kareh, MD, MPH, hospitalist at UC San Diego Health and associate professor at UC San Diego of Medicine, who was instrumental in building translational tools to help ICUs move recommendations into practice.   

UC San Diego Health has already implemented the family-centered care approach, partnering with family members to inform physicians about personal experiences and ways to improve practices. The ICUs at UC San Diego Health encourage a culture of families being present, even during physician rounds and the resuscitation of a loved one. All 52 rooms in the neonatal intensive care unit at the new Jacobs Medical Center at UC San Diego Health are private to encourage parents to touch and hold their infants and reduce the risk of infection.

“UC San Diego Health is also one of the first in the nation to operationalize a post-ICU clinic to support patients and families after their hospital stay, going above the current recommendations for practice,” said Davidson.

Additional co-authors include: Mary Wickline, and Alexander Kon, UC San Diego; Rebecca Aslakson, and Sandra Swoboda, Johns Hopkins; Ann Long, Erin Kross, and J. Randall Curtis, Harborview Medical Center, University of Washington; Kathleen Puntillo, and Linda Franck, University of California San Francisco; Joanna Hart, Perelman School of Medicine, University of Pennsylvania; Christopher Cox, Duke University; Hannah Wunsch, University of Toronto; Mark Nunnally, University of Chicago and New York University; Giora Netzer, and Elie Azoulay, University of Maryland School of Medicine; Nancy Kentish-Barnes, Hôpital Saint Louis; Charles Sprung, Hadassah Hebrew University Medical Center; Christiane Hartog, Jena University Hospital; Maureen Coombs, Victoria University of Wellington; Rik Gerritsen, Medisch Centrum; Ramona Hopkins, Brigham Young University and Intermountain Medical Center; Yoanna Skrobik, MSc McGill University; Elizabeth Scruth, Kaiser Permanente; Maurene Harvey, Lake Tahoe; Mithya Lewis-Newby, University of Washington, Seattle Childrens Hospital; Douglas White, University of Pittsburgh Medical Center; Colin Cooke, University of Michigan Hospitals; and Mitchell Levy, The Warren Alpert School at Brown University.