What is the best way to identify dyspnea in a patient with end‑stage disease?

Dyspnea Assessment in End-Stage Disease

Dyspnea in patients with end-stage disease is best identified using a 0-10 Numerical Rating Scale (NRS), with patient self-report as the gold standard when possible, and the Respiratory Distress Observation Scale (RDOS) for patients unable to self-report. 1

Patient Self-Report Assessment

For communicative patients:

• Use the 0-10 Numerical Rating Scale (NRS) as the primary assessment tool, where 0 = no shortness of breath and 10 = worst shortness of breath imaginable 1
• The NRS is recommended due to its simplicity and validity in palliative care settings 1, 2
• Patients can either verbally state or point to the number that represents their symptom severity 1
• Focus treatment on patients with dyspnea scores ≥4, especially those with scores ≥7 1
• A vertical visual analog scale (VAS) is an alternative, though patients prefer it over horizontal VAS for dyspnea reporting 1
• Regular reassessment using standardized scales is essential, as dyspnea severity can fluctuate 1

Critical limitation: More than half (54%) of end-stage patients are unable to provide even a yes/no response about dyspnea due to declining consciousness and cognitive function near death 3

Assessment for Non-Communicative Patients

When patients cannot self-report:

• Use the Respiratory Distress Observation Scale (RDOS) as the validated observational tool 4, 5
• The RDOS has excellent inter-rater reliability (ICC 0.947) and good discriminant properties (AUC 0.874) for identifying moderate-to-severe dyspnea 4
• An RDOS score ≥4 predicts moderate-to-severe dyspnea with 76.6% sensitivity and 86.2% specificity 4
• The RDOS allows inclusion of cognitively impaired or unconscious patients who are otherwise excluded from dyspnea assessment 2, 5

Caregiver assessment alternative:

• When RDOS is not available, trained caregivers can accurately estimate dyspnea using the modified Borg scale (ICC 0.82) or VAS (ICC 0.79) 6
• Mean differences between patient and caregiver ratings are small (0.31 for Borg, 0.36 for VAS) 6

Key Clinical Pitfalls

Critical assessment errors to avoid:

• Do not rely on oxygen saturation (SpO2) alone – distress from breathlessness is not correlated with degree of hypoxemia 1
• Declining consciousness and cognitive state are strongly correlated with nearness to death, making self-report impossible in 54% of end-stage patients 3
• Only 49% of patients able to respond yes/no can quantify distress using VAS 3
• The ability to self-report is lost in the near-death phase, yet the ability to experience distress persists – this creates risk of undertreatment or overtreatment 3
• Dyspnea is underrepresented in most end-of-life cohorts because self-report measures exclude the sickest patients 2

Assessment Framework

Systematic approach:

• Assess psychosocial factors contributing to multi-dimensional distress from breathlessness 1
• Record subjective severity and intensity regularly to evaluate degree of suffering and treatment effect 1
• Use standardized scales for recurrent assessment, especially when using individualized N-of-1 approaches 1
• Document whether assessment is by patient self-report, caregiver proxy, or observational tool 6, 4
• Treatment decisions should be guided by symptom score rather than SpO2 readings 1