Using a Dyspnea Assessment Tool to Improve Care at the End of Life

Lorri Birkholz, DNP, RN, NE-BC; Tina Haney, DNP, CNS, RN


Journal of Hospice and Palliative Nursing. 2018;20(3):219-227. 

In This Article


Nurses use inspection, palpation, and auscultation when assessing patient respirations. A thorough respiratory assessment assesses rate, depth, rhythm, pattern, and effort.[2] For many patients with end-stage lung disease or advanced cancer, changes may occur in all areas of the assessment. As death nears, it is common to see tachypnea or bradypnea, changes in respiratory depth, irregularity in breathing pattern, audible sounds accompanying inspiration and/or expiration, and increased work of breathing including the use of accessory muscles.[2]

Dyspnea at the end of life can be a symptom that is distressing to patients, family members, and care providers.[3,4] The American Thoracic Society broadly describes dyspnea as "…a term used to characterize a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity."5(p322) This definition supports the concept that dyspnea is a sensation and a perception that can only be self-reported. However, because of cognitive and physiologic changes that often occur in patients in their final days of life, it is necessary for nurses to be able to accurately assess dyspnea in patients who cannot self-report.[6,7] Dyspnea at the end of life is a common occurrence, yet there are relatively few operationalized measures in place to evaluate and treat dyspnea and associated outcomes to improve quality of life at end of life.[8] Research has supported that dyspnea at the end of life is the most distressing symptom for family members and often results in complicated grief due to their feelings of guilt from perceived suffering.[3]

Despite the increasing prevalence of palliative care and hospice programs in the past 20 years, patients and families still report distressing symptoms at the end of life.[9,10] Dyspnea occurs in up to 70% of patients in the hours and days preceding death, and biobehavioral studies have shown that dyspnea involves both physical and emotional suffering for patients.[11] Because dyspnea is defined as a self-reported symptom, it is essential that nurses possess astute assessment skills when treating patients at end of life who cannot self-report their distress. The alleviation of distress and symptom management are primary objectives of hospice nurses, and nurses can experience emotional duress when they are unable to alleviate perceived suffering.[4] Also, in addition to patient suffering, the distress associated with end-of-life dyspnea can often leave families feeling guilty and angry, which can result in an increased propensity for depression, complicated grief, and other mood disturbances.

Over the past 8 years, the RDOS has been used in various settings including intensive care areas, acute care, and palliative care.[12] There continues to be ethical debate about the vulnerability of using patients near the end of life in research. As death nears, there is an increased likelihood of intermittent periods of delirium, which can impact decision-making capacity.[13] In addition, using actual patients for end-of-life teaching purposes can be challenged by the imminence of death. For these reasons and in an effort for the author to have more control over the scenarios, professional standardized patients were used for this study.

A comprehensive review of the literature using CINAHL, PubMed, and MEDLINE and the terms dyspnea, dyspnea tools, and Respiratory Distress Observation Scale identified only 9 relevant studies related to the RDOS tool. The initial study designed to establish the reliability and construct validity of the tool used healthy volunteers and 2 other groups of patients who could self-report. In this study, the RDOS was used along with the Dyspnea Visual Analog Scale, but because dyspnea and respiratory distress are essentially incongruent, this may have been a less than an ideal comparison.[14] Some studies on the RDOS have used populations who could self-report and/or had known conditions that resulted in experiencing dyspnea (chronic obstructive pulmonary disease, congestive heart failure, and pneumonia). This type of selection has the potential to bias the samples and study outcomes.[11] Recently, RDOS cutoff points were published and identified.[15] A RDOS score of 3 or greater is an indication that the patient requires palliation of respiratory distress.[15,16] To date, the RDOS is the only validated tool available for the assessment of dyspnea in patients who cannot self-report. The 8-item RDOS[6] has a Cronbach's α of .64. In 2013, the RDOS tool was used in a hospice/palliative care setting as an operational variable focused on determining the relevance of applying routine oxygen at end of life.[17] While the study involved patients who were near death, the RDOS was used to measure presence and degree of respiratory distress, with the emphasis being on determining whether oxygen was beneficial when death was near.[17] Unfortunately to date, there is no established validity for use of the tool with the nonverbal end-of-life population.

This article presents a unique educational program that utilized prerecorded ethnically diverse standardized patient scenarios that depicted various degrees of dyspnea. The program was designed specifically for nurses who provide end-of-life care but were not using the RDOS to assess and manage dyspnea. Specifically, the 4 research questions for this study were as follows:

  • Do nurses demonstrate differences in their assessment skills of end-of-life dyspnea in nonverbal patients following a structured training program on the use of the RDOS?

  • Do nurses demonstrate differences in their treatment selections of end-of-life dyspnea in nonverbal patients following a structured training program on the use of the RDOS?

  • Do nurses demonstrate differences in their ability to assess degrees of dyspnea following a structured training program on the use of the RDOS?

  • Do nurses who have been trained in the use of the RDOS report ease of use and satisfaction with the tool?

Integrating validated tools into clinical practice is critical for the successful transition to evidence-based nursing care.[1,18] Nurses have long developed and sustained nursing practices based on anecdotal and experiential learning. If care providers are not using a validated tool to assess dyspnea, it is up to the perception of the provider to determine increased respiratory effort.[19] Standardization of practices and the use of quantitative tools such as the RDOS and pain scales have the potential to reduce care disparities between providers, which can result in improved patient and family comfort at the end of life.