|Family Members of Patients Who Die in the ICU
Report Greater Satisfaction with Communication and Involvement
than Family Members 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
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 patientís 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.