Assessment Tools for Dyspnea and Respiratory Distress at the End of Life

  • Casey Murphy MD
  • Jacquelyn Simonis MD

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Background    Difficulty breathing is a common symptom that often escalates in severity as patients approach their final days of life (1,2). However, accurate assessment of a patient’s difficulty breathing at the end of life can be challenging. First, dyspnea is often under-detected and undertreated (3), and there is poor agreement between patient perception and professional assessment of dyspnea (4,5). Impaired cognition and communication compound the challenges of assessing dyspnea and respiratory distress in patients nearing the end of life (2,6). Utilizing validated assessment tools for dyspnea and respiratory distress can offer a shared clinical language to promote better care. This Fast Fact will discuss key issues in the assessment of dyspnea and respiratory distress in the care of patients who are dying. 

How is respiratory distress different from dyspnea? Dyspnea is a symptom, the subjective experience of breathing discomfort (7).  Thus, it is reliant on self-report. In contrast, respiratory distress refers to observable signs which suggest labored breathing.  These signs include an increase in the work of breathing, heart rate (HR), and respiratory rate (RR), along with a distressed facial expression (1,7,8). Unfortunately, commonly measured signs such as HR, RR, and hypoxia (as measured via pulse oximetry) are unreliable in assessing a patient’s level of dyspnea (9). Additionally, discrepancies are common between a patient’s perception of their dyspnea and the caregiver’s (10). For example, among patients undergoing spontaneous breathing trials (SBT) in intensive care settings, half of the nurses and doctors underestimated breathlessness compared to the patient’s self-report (11). 

Practical tools for assessment:

In patients who can self-report: A multitude of assessment tools have been studied for dyspnea, but no optimal scale for patients with serious illness has been identified (12-15). Simply asking a patient if they are short of breath (yes/no) is insufficient since total relief of dyspnea in advanced disease is not expected (6). The Numerical Rating Scale (NRS), Borg scale, and Visual Analog Scale (VAS) are easy to use, numeric assessment tools which can better assess response to treatments (12-14). The Edmonton Symptom Assessment System (ESAS) can also identify the severity of dyspnea and its response to treatment utilizing the descriptors none, mild, moderate, or severe (15).  Perhaps more important than the exact tool used, is making sure the entire clinical team is comfortable with the tool and utilize the same tool in a consistent manner.

In patients who cannot self-report: The Respiratory Distress Observation Scale (RDOS) is likely the best available tool for evaluating respiratory distress in patients who are not able to self-report dyspnea (16). A numeric score is assigned typically by a nurse or respiratory therapist for heart rate, respiratory rate, restlessness, paradoxical breathing (abdominal muscles moving in with inspiration), accessory muscle use (observable rise in clavicle during inspiration), grunting at end-expiration, nasal flaring, and facial expression of fear (eyes wide open, facial muscles tense, brow furrowed, mouth open, and/or teeth together). Evidence suggests the RDOS can be administered and scored in less than 5 minutes (16). A RDOS score of 3 or greater indicates respiratory distress and the need for palliative interventions (16-18). A score less than 3 suggests that the patient is not suffering from respiratory distress and is often used as an endpoint for identifying responsiveness to treatments (17). Higher RDOS scores have been correlated with worsening symptoms (13). The RDOS has been utilized as a guide for the provision of as needed medications such as opioids in patients who are terminally ill. In this capacity, it offers the potential to mitigate distress or hesitancy in providing as needed palliative therapies on the part of nurses, clinicians, and caregivers. There is limited evidence, however, in how frequently RDOS assessment should occur. Other available tools suggest utilizing RR alone to assess respiratory distress and the need for palliative therapies (19).  However, doing so may risk over-treatment of reflexive tachypnea from acidemia for example in patients who may not be exhibiting other signs of discomfort (e.g., facial expression of fear). 

Summary:  Clinical gestalt can be an inaccurate measure of dyspnea and respiratory distress at the end of life. Clinical tools aim to improve assessment and treatment of end-of-life respiratory symptoms. 

  • Rely on patient report of dyspnea whenever possible. The NRS, Borg scale, VAS, and ESAS are recognized dyspnea assessment tools that can also be used to monitor response to treatment.
  • When patients cannot self-report dyspnea at the end of life, the RDOS is likely our best available tool to evaluate respiratory distress and guide palliative interventions. 
  • Health care systems should work with clinicians and units who care for patients with serious illness to best integrate these tools within the electronic health records and clinical workflow.


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Authors’ Affiliations: University of Utah Huntsman Cancer Institute, Salt Lake City, UT.

Conflicts of Interest:  none 

Version History:  first electronically published in November 2022, originally edited by Sean Marks MD.