Palliative care-led support does not reduce caregiver anxiety, study finds

Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms, according to a study appearing in the July 5 issue of JAMA.

Patients are considered to have developed chronic critical illness when they experience acute illness requiring prolonged mechanical ventilation or other life-sustaining therapies but neither recover nor die within days to weeks. It is estimated that chronic critical illness affected 380,000 patients in the United States in 2009. Family members of patients in the intensive care unit (ICU) experience emotional distress including anxiety, depression, and posttraumatic stress disorder (PTSD). Palliative care specialists are trained to provide emotional support, share information, and engage patients and surrogate decision makers in discussions of patient values and goals of care.

Shannon S. Carson, M.D., of the University of North Carolina School of Medicine, Chapel Hill, N.C., Judith E. Nelson, M.D., J.D., of the Memorial Sloan Kettering Cancer Center, New York, and colleagues randomly assigned adult patients requiring 7 days of mechanical ventilation and their family surrogate decision makers to at least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention), or provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. The study was conducted at 4 medical ICUs.

Among 365 family surrogate decision makers, 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group. Posttraumatic stress disorder symptoms were higher in the intervention group compared with the control group. There was no difference between groups regarding the discussion of patient preferences. The median number of hospital days for patients in the intervention vs the control group and 90-day survival were not significantly different.

Potential explanations for this lack of benefit may relate to the high perceptions of quality of communication, emotional support, and family satisfaction in the usual care control. "When informational support provided by the primary team is sufficient, additional focus on prognosis may not help and could further upset a distressed family, even when emotional support is concurrently provided," the authors write. "Alternatively, the intervention may have been insufficient to overcome the high levels of family stress associated with having a relative with chronic critical illness."

"These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness."

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