Documentation of patient and family engagement in treatment decision-making is not usually found in the EHR until available medical treatments fail to achieve physiologic goals.1

“Our findings highlight the need for interprofessional and system-level efforts to engage patients and families in treatment decisions throughout the longitudinal course of critical illness,” says Jacqueline Kruser, MD, MS, the study’s lead author.

Researchers analyzed the records of 52 adult patients admitted to a medical ICU in 2016. Of this group, half had chronic critical illness. Half died or transitioned to hospice care in the ICU before developing chronic critical illness.

“For patients with life-threatening illness in the intensive care unit, we aim to provide medical interventions that align with patients’ values and goals,” says Kruser, an instructor in the division of pulmonary and critical care medicine at Northwestern University Feinberg School of Medicine.

Clinicians are ethically obligated to engage patients and families in medical treatment decisions. “But this can be incredibly challenging due to the unpredictable, dynamic, and often urgent nature of providing critical care,” Kruser notes. Typically, the course of a critical illness unfolds over days to weeks in the ICU. Numerous individual treatment decisions are made during that time.

“We wanted to better understand how patients and their family members were engaged in decision-making,” Kruser explains. The researchers were struck by how often clinicians used the phrase “goals of care” in their notes. This phrase was found in almost every patient’s record. “Our analysis uncovered several different uses for this phrase,” Kruser reports.

Importantly, it typically was not used to describe a patient’s actual goal for his or her medical care. Instead, the phrase was used to convey poor prognosis; describe conflict among patients, clinicians, and families; or provide a rationale for specific treatment limitations. The biggest ethical concern is that patients’ actual goal for their medical care may not have been addressed. “It appears as if ‘goals of care’ is used, instead, to communicate about these three other concepts related to end-of-life care and the use of life-sustaining treatments,” Kruser offers.

Ethicists can help ensure that the phrase “goals of care” is used accurately to communicate patient-centered goals, Kruser says. This is important in various contexts — when used by individual clinicians, clinical teams, or administrators; or in the hospital’s written policies and procedures. Close collaboration between ethics and the ICU clinical team can go a long way toward addressing this issue. The overarching goal, says Kruser, is “to create a local culture in the ICU that prioritizes, values, and promotes patient and family engagement throughout the course of critical illness.”


  1. Kruser JM, Benjamin BT, Gordon EJ, et al. Patient and family engagement during treatment decisions in an ICU: A discourse analysis of the electronic health record. Crit Care Med 2019;47:784-791.