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.

References:

1.         Campbell ML, Kiernan JM, Strandmark J, Yarandi HN. Trajectory of Dyspnea and Respiratory Distress among Patients in the Last Month of Life. J Palliat Med. Feb 2018;21(2):194-199. doi:10.1089/jpm.2017.0265

2.         Hui D, dos Santos R, Chisholm GB, Bruera E. Symptom Expression in the Last Seven Days of Life Among Cancer Patients Admitted to Acute Palliative Care Units. J Pain Symptom Manage. Oct 2015;50(4):488-94. doi:10.1016/j.jpainsymman.2014.09.003

3.         Gentzler ER, Derry H, Ouyang DJ, et al. Underdetection and Undertreatment of Dyspnea in Critically Ill Patients. Am J Respir Crit Care Med. Jun 1 2019;199(11):1377-1384. doi:10.1164/rccm.201805-0996OC

4.         Stefan MS, Priya A, Martin B, et al. How well do patients and providers agree on the severity of dyspnea? J Hosp Med. Oct 2016;11(10):701-707. doi:10.1002/jhm.2600

5.         Nekolaichuk CL, Bruera E, Spachynski K, MacEachern T, Hanson J, Maguire TO. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med. Jul 1999;13(4):311-23. doi:10.1191/026921699675854885

6.         Mularski RA, Campbell ML, Asch SM, et al. A review of quality of care evaluation for the palliation of dyspnea. Am J Respir Crit Care Med. Mar 15 2010;181(6):534-8. doi:10.1164/rccm.200903-0462PP

7.         Parshall MB, Schwartzstein RM, Adams L, et al. An official American Thoracic Society statement: update on the mechanisms, assessment, and management of dyspnea. Am J Respir Crit Care Med. Feb 15 2012;185(4):435-52. doi:10.1164/rccm.201111-2042ST

8.         Campbell ML. Fear and pulmonary stress behaviors to an asphyxial threat across cognitive states. Res Nurs Health. Dec 2007;30(6):572-83. doi:10.1002/nur.20212

9.         Gilman SA, Banzett RB. Physiologic changes and clinical correlates of advanced dyspnea. Curr Opin Support Palliat Care. Jun 2009;3(2):93-7. doi:10.1097/SPC.0b013e32832b42ba

10.       Lush MT, Janson-Bjerklie S, Carrieri VK, Lovejoy N. Dyspnea in the ventilator-assisted patient. Heart Lung. Sep 1988;17(5):528-35.

11.       Haugdahl HS, Storli SL, Meland B, Dybwik K, Romild U, Klepstad P. Underestimation of Patient Breathlessness by Nurses and Physicians during a Spontaneous Breathing Trial. Am J Respir Crit Care Med. Dec 15 2015;192(12):1440-8. doi:10.1164/rccm.201503-0419OC

12.       Bausewein C, Farquhar M, Booth S, Gysels M, Higginson IJ. Measurement of breathlessness in advanced disease: a systematic review. Respir Med. Mar 2007;101(3):399-410. doi:10.1016/j.rmed.2006.07.003

13.       Dorman S, Byrne A, Edwards A. Which measurement scales should we use to measure breathlessness in palliative care? A systematic review. Palliat Med. Apr 2007;21(3):177-91. doi:10.1177/0269216307076398

14.       Campbell ML. Caring for dying patients in the intensive care unit: managing pain, dyspnea, anxiety, delirium, and death rattle. AACN Adv Crit Care. Apr-Jun 2015;26(2):110-20; quiz 121-2. doi:10.1097/NCI.0000000000000077

15.       Hui D, Bruera E. The Edmonton Symptom Assessment System 25 Years Later: Past, Present, and Future Developments. J Pain Symptom Manage. Mar 2017;53(3):630-643. doi:10.1016/j.jpainsymman.2016.10.370

16.       Campbell ML, Templin T, Walch J. A Respiratory Distress Observation Scale for patients unable to self-report dyspnea. J Palliat Med. Mar 2010;13(3):285-90. doi:10.1089/jpm.2009.0229

17.       Campbell ML, Templin TN. Intensity cut-points for the Respiratory Distress Observation Scale. Palliat Med. May 2015;29(5):436-42. doi:10.1177/0269216314564238

18.       Zhuang Q, Yang GM, Neo SH, Cheung YB. Validity, Reliability, and Diagnostic Accuracy of the Respiratory Distress Observation Scale for Assessment of Dyspnea in Adult Palliative Care Patients. J Pain Symptom Manage. Feb 2019;57(2):304-310. doi:10.1016/j.jpainsymman.2018.10.506

19.  O’Mahony S, et al. Ventilator withdrawal: procedures and outcomes. Report of a collaboration between a critical care division and a palliative care service. Journal of pain and symptom management 26.4 (2003): 954-961.

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.