Distinct Death-Preparedness States by Combining Cognitive and Emotional Preparedness for Death and Their Evolution for Family Caregivers of Terminally Ill Cancer Patients Over Their Last 6 Months of Life

Abstract

ContextTo identify caregivers’ death-preparedness states by combining cognitive and emotional preparedness for their loved one's death as well as their evolution over cancer patients’ last 6 months, which have never been explored. MethodsDeath-preparedness states and their evolution were examined by hidden Markov modeling among 393 caregivers of cancer patients. ResultsFour death-preparedness states were identified: no death preparedness, cognitive death preparedness only, emotional death preparedness only, and sufficient death preparedness. Caregivers in the no-death-preparedness state had neither accurate cognitive prognostic awareness (PA) nor adequate emotional preparedness for death. Caregivers in the sufficient-death-preparedness state reported accurate PA and adequate emotional preparedness for death. In the cognitive- and emotional-death-preparedness-only states, caregivers were accurately aware of the patient's prognosis and adequately emotionally prepared for his/her forthcoming death only, respectively. Prevalence of the sufficient-death-preparedness state fluctuated within a narrow range (40.8%–43.2%) over the patient's last six months. Proportions of caregivers decreased in the emotional-death-preparedness-only (19.5%–6.5%) and no-death-preparedness (21.0%–8.2%) states, whereas prevalence of the cognitive-death-preparedness-only state increased substantially (16.3%–44.4%) to become the most prevalent state as death approached. ConclusionCaregivers of cancer patients heterogeneously experienced combined cognitive and emotional preparedness for death. About 40% of caregivers consistently had sufficient death preparedness over their loved one's dying process. Evaluating these different aspects of death preparedness could be an important approach in high-quality end-of-life care by not only cultivating caregivers’ cognitive PA, but also facilitating their emotional preparedness for the patient's death, thus helping caregivers prepare well for their loved one's forthcoming death.