Families of ICU fatalities more satisfied with communication, involvement than families of ICU survivors

Family members of loved ones who died in the intensive care unit (ICU) tend to be more satisfied with the care they and the patient received than family members of ICU survivors, according to a study published in the November 13, 2007, issue of the journal Chest. Family members of all ICU patients tended to rate the physical care of the patient highly. But those of ICU decedents tended to be more pleased with their involvement in decision-making and communication, as well as the emotional support, respect, compassion, and consideration they and the patient received, than those of survivors. This study was funded by the National Institute of Nursing Research (NINR), a component of the National Institutes of Health (NIH), along with funding from the Robert Wood Johnson Foundation and the American Lung Association.

The ICU is a highly stressful environment for patients and their families. Most ICU patients are unconscious or incapacitated. Their care involves constant vigilance by skilled clinicians, complex technologies, and unfamiliar and often frightening medical interventions, and the outcome is fraught with uncertainty. For these reasons, family members are often closely involved in care decisions, so the scope of ICU care has to include the whole family.

“Our research team has focused on improving the quality of care delivered to critically ill patients and their family members,” said J. Randall Curtis, MD, MPH, the principal investigator of the study. “In one of our prior studies, we noticed that families of patients dying in the ICU were more satisfied with the ICU experience than families whose loved one survived their ICU stay. We found this surprising and, therefore, we decided to further explore the reasons for this difference.”

“Most patients admitted to an ICU are very sick and near death. The ICU clinicians are adept at using their skill and knowledge to try to save the patient’s life. As indicated by the survey, families appreciate this life-saving care,” said NINR Director Patricia A. Grady, PhD, RN, FAAN. “However, in the pressure of the ICU, clinicians may overlook certain aspects of care and communication that can help family members to better understand and be involved with what is happening to their loved one.”

The study involved several hospitals in the Seattle area. The researchers used a 24-item family satisfaction in the ICU (FS-ICU) questionnaire to survey 539 family members of ICU patients. The FS-ICU was divided into items focused on satisfaction with patient-centered aspects of care and satisfaction with family-centered aspects of communication and decision-making. Of the respondents, 51 percent were from family members of ICU decedents, and 49 percent from family members of survivors.

Family members of the decedents tended to be Caucasian, older, and an adult child of the patient, compared to family members of survivors. On 12 questionnaire items, the family members of decedents rated their satisfaction higher than the family members of survivors; on the other 12 items no differences were noted. There were no items that family members of survivors rated higher. The largest differences of ratings occurred in the responses to family-centered items: inclusion in decision-making; clinician communication; emotional support; staff respect and compassion; willingness of staff to answer questions; and consideration of family needs.

“Up to 20 percent of all deaths in the United States occur in or shortly after an ICU stay. Many of these patients are surrounded by family members who experience stress, fear, anxiety and depression,” said Dr. Curtis. “The desire for information and emotional support is a common theme among all ICU families, regardless of whether the patient lives or dies. In fact, clinician-family communication is possibly the most important factor driving family satisfaction in the ICU.”

“These findings do not necessarily indicate that dying patients in the ICU receive better care, but they suggest that ICU clinicians may devote extra time and attention to the needs of patients and their families when death is imminent,” said Dr. Grady. “This information can point to ways to improve the ICU experience and decrease stress for all ICU patients and their families.”

The primary mission of the NINR, one of 27 Institutes and Centers at the National Institutes of Health, is to support clinical and basic research and establish a scientific basis for the care of individuals across the life span. For additional information, visit the NINR web site at www.ninr.nih.gov.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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