Beyond Pain: Nurses’ Assessment of Patient Suffering, Dignity, and Dying in the Intensive Care Unit

CONTEXT: Deaths in the intensive care unit (ICU) are increasingly common in the U.S., yet little is known about patients’ experiences at the end of life in the ICU. OBJECTIVES: The objective of this study was to determine nurse assessment of symptoms experienced, and care received by ICU patients in their final week, and their associations with nurse-perceived suffering and dignity. METHODS: From September 2015 to March 2017, nurses who cared for 200 ICU patients who died were interviewed about physical and psychosocial dimensions of patients’ experiences. Medical chart abstraction was used to document baseline patient characteristics and care. RESULTS: The patient sample was 61% males, 70.2% whites, and on average 66.9 (SD 15.1) years old. Nurses reported that 40.9% of patients suffered severely and 33.1% experienced severe loss of dignity. The most common symptoms perceived to contribute to suffering and loss of dignity included trouble breathing (44.0%), edema (41.9%), and loss of control of limbs (36.1%). Most (n = 9) remained significantly (P < 0.05) associated with suffering, after adjusting for physical pain, including fever/chills, fatigue, and edema. Most patients received vasopressors and mechanical ventilation. Renal replacement therapy was significantly (<0.05) associated with severe suffering (adjusted odds ratio [AOR] 2.53) and loss of dignity (AOR 3.15). Use of feeding tube was associated with severe loss of dignity (AOR 3.12). CONCLUSION: Dying ICU patients are perceived by nurses to experience extreme indignities and suffer beyond physical pain. Attention to symptoms such as dyspnea and edema may improve the quality of death in the ICU.