The Bereaved Families' Preferences for Individualized Goals of Care for Terminal Dyspnea: What Is an Acceptable Balance between Dyspnea Intensity and Communication Capacity?

Background: Toward the individualized care of terminally ill patients with dyspnea (“terminal dyspnea”), it is essential to identify individualized goals of care (GOC) to achieve an acceptable balance between dyspnea intensity and communication capacity. Objective: To explore preferences for individualized GOC for terminal dyspnea, and factors associated with the preferences. Design: A nationwide cross-sectional survey. Setting/Subjects: In total, 1055 bereaved families of cancer patients admitted to 167 inpatient hospices in Japan. Measurements: Preferences for individualized GOC for terminal dyspnea to achieve an acceptable balance between dyspnea intensity and communication capacity, should individuals experience continuous moderate or severe/overwhelming dyspnea despite optimal palliative care, and perceptions about a good death. Results: Among 548 participants (response rate = 52%), we analyzed responses of 477 families whose loved one suffered dyspnea in the last week of life. In total, 167 (45%; 95% confidence interval [CI] = 40%–50%) and 272 (80%; 95% CI = 75%–84%) participants would prioritize dyspnea relief over communication capacity, should they continuously suffer moderate or severe/overwhelming dyspnea, respectively. In multivariate analyses, the determinants of the prioritization of dyspnea relief were perceiving physical comfort as important for a good death (odds ratio [OR] = 1.389; 95% CI = 1.062–1.818; p = 0.017) in moderate dyspnea, and perceiving physical comfort (OR = 2.505; 95% CI = 1.718–3.651; p < 0.001) and not perceiving mental awareness (OR = 0.695; 95% CI = 0.529–0.913; p = 0.009) as important in severe/overwhelming dyspnea. Conclusions: Preferences for individualized GOC for terminal dyspnea can vary among individuals and with different symptom intensity, and may be influenced by perceptions about a good death. Outcome measurements incorporating an acceptable balance between dyspnea intensity and communication capacity should be developed.