Individuals facing terminal illness commonly endure considerable physical and mental distress. This suffering influences the patients directly as they cope with the pain of their disease, as well as their family members, who are impacted by the patient’s condition and related medical choices. In addition, investigating how patients and their families perceive a “good death” is key to reflecting on the meaning of life and to designing appropriate treatment or care approaches (such as advance care planning). As a result, gaining insight into these matters is vital for advancing palliative care services and improving patients’ overall quality of life. The purpose of this study was to create a clinical assessment instrument that allows patients with terminal cancer to evaluate for themselves whether they are moving toward a good death. The concept of a good death used in this work was constructed through detailed interviews with terminal cancer patients, combined with qualitative analysis performed by specialists in a dedicated research program. Three core themes emerged from the analysis: “living in dying (L)”, “experiencing the existential self (E)”, and “dying in living (D).” Based on these, the principal and co-principal investigators developed the initial LED Good Death Index (LED-GDI) using the three main themes together with the 15 subtopics that define the LED Good Death concept.
In total, 144 participants finished the LED-GDI assessment. The Cronbach’s alpha coefficient for the LED-GDI reached 0.854. Findings indicated that the LED-GDI successfully enabled patients to determine whether they were approaching a good death. The underlying philosophy of the LED-GDI resonates strongly with Confucian traditions in East Asia and stresses the value of living meaningfully before death. Consequently, the primary aim of clinical end-of-life care should be to establish whether patients suffering from terminal illness can experience a good death while remaining fully alive until their final moments.
