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

Abstract

ContextDeaths 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.ObjectivesThe 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.MethodsFrom 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.ResultsThe 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).ConclusionDying 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.

Timing is everything: Early do-not-resuscitate orders in the intensive care unit and patient outcomes

“…All of the measures below have been validated in prior published work. [14] DNR order status. The information about DNR orders was collected via inpatient electronic medical record systems.…”

“…Results from our recently published report on nurse perception of suffering at the end of life in the ICU did not demonstrate an association between DNR status and quality of death, but did not distinguish early from late DNR. [14] Few studies have examined the timing of DNR orders and its association with mortality, length of stay, interventions, and cost. [15][16][17][18] To our knowledge, no previous studies have reported associations between DNR timing and patient-centered outcomes, such as physical or emotional distress, peacefulness, suffering or loss of dignity.…”

Dignity or Dignities? When a Concept Has Multiple Meanings

“…From these conceptions of dignity, we can now infer that the article by Su et al 1 was referring to an extrinsic view of dignity. As an example, the authors said that the use of feeding tubes and some symptoms such as broken skin were associated with loss of dignity.…”

“…First, I want to suggest a reflection on the many meanings of the concept of dignity. This reflection will then help explain how the lack of an explicit definition may have influenced the findings of the research of Su et al 1 What do the authors mean by dignity? Why and how does someone lose or gain dignity?…”

“…What could have been perceived as a loss in dignity by the nurses was not necessarily consistent with the interpretation that the patients and their families had of the situation. As soon as in the abstract, and then at several additional points in the article, Su et al 1 made assumptions about the equivalence of the perception of the nurses and the experience of patients, by stating that ''To advance understanding of the patient experience at the EoL in the ICU, we conducted a study of patients who died in ICUs (.)'' (p. 4).…”