A 65-year-old man visited his primary care physician with a complaint of insomnia in the several months since his wife died from a massive brain injury sustained in an automobile accident. He said, “After the accident, when my wife was in the ICU, my children and I were just waiting and waiting. We kept asking, ‘Will she wake up? How long do we wait to see? How do we know when it’s time to let go?’ We didn’t know who to turn to with our questions. I have so much self-doubt about the decisions I had to make.”
Approximately one in five Americans die in a hospital intensive care unit (ICU) or shortly after discharge from an ICU. Most deaths involve difficult decisions made by family members or surrogate decision makers to forego additional therapies that are unlikely to preserve the patient’s quality of life. Unfortunately, many family members and surrogate decision makers experience poor communication with ICU clinicians, including lack of daily updates and timely family meetings where discussion of the patient’s prognosis, values, options for comfort-focused treatment, aid in decision-making, and emotional support could be provided. Poor communication in the ICU can contribute to prolonging invasive treatments that may not be aligned with the patient’s values and psychological distress for the decision makers.
This week, NEJM published the results of a multicenter randomized trial of an interprofessional family support intervention in the ICU. Family members of 1420 patients at high risk of death were cluster randomized to receive the family support intervention or usual care. The PARTNER (PAiring Re-engineered ICU Teams with Nurse-driven Emotional Support and Relationship-building) intervention involved indepth training for designated nurses on communicating and supporting families of seriously-ill patients and a protocol for daily nurse contact with families, clinician-family meetings within 2 days and every 5–7 days to provide families emotional support, updates on the patient’s condition, prognosis and treatment options, address the family’s questions and concerns, clarify the patient’s values, and aid in decision making.
Surrogates were interviewed 6 months after the patient’s ICU discharge or death. The primary outcome was surrogates’ anxiety and depression (measured by the Hospital Anxiety and Depression Scale). Secondary outcomes were surrogates’ post-traumatic stress-related experience (as measured by the Impact of Events scale), ratings of the quality of clinician-family communication and patient- and family-centeredness of care, and ICU length of stay.
At 6-month follow up, surrogates’ levels of anxiety and depression (the primary outcome) and post-traumatic stress-related symptoms did not differ between the two groups. However, surrogates’ ratings of the quality of communication with the healthcare team (P=0.001) and patient- and family-centeredness of care (P=0.006) were significantly higher in the intervention group. In addition, the mean length of ICU stay was marginally shorter in the intervention group (incidence rate ratio, 0.90; P=0.045), mediated by a shorter ICU stay for patients who died (IRR, 0.64; P<0.001).
The authors concluded that although the ICU family support intervention did not reduce surrogates’ psychological distress after 6 months, it was associated with improved quality of communication and patient- and family-centeredness of care and reduced length of stay in the ICU, suggesting that efforts to improve communication and align ICU treatment with patients’ preferences may facilitate end-of-life care decisions that prioritize patients’ comfort over prolonging care. Dr. Jeffrey Drazen, a Critical Care specialist and NEJM Editor-in-Chief commented, “This study provides the equipoise needed for a larger study of this type of intervention. Families need good communication with their ICU team; this model is a promising way to start.”
Returning to the widower, the physician should listen empathetically, offer condolences, assess the patient’s mental health and social support, discuss additional support and treatment options, and schedule follow-up. In addition, the physician can commit to advocate for interventions to improve clinician-family communication in the ICU — as well as after discharge or death of a patient — to provide more effective emotional support and guidance for family members through the challenging process of decision making and bereavement.
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Karen is a 2017-2018 NEJM Editorial Fellow, Clinical Professor at UC Berkeley-UCSF Joint Medical Program and UC Berkeley School of Public Health, researcher on children’s nutrition and oral health, and member of American Academy of Pediatrics.