Predictors and Impact of Death Preparedness on Terminally Ill Cancer Patients and Their Family Caregivers

One of the important dimensions in the quality of dying and death is being prepared for end of life (EOL) and knowing that one's family is prepared. Death preparedness involves a transition that leads to awareness and acceptance of the patient’s forthcoming death and is a multidimensional construct, with not only cognitive but also affective and behavioral components. Cognitive and emotional preparedness for the forthcoming death improves terminally ill patients’ and their family caregivers quality of life (QOL), reduces psychological distress, enhances spiritual well-being, increases satisfaction with EOL care, promotes a higher quality death and dying for the patient as evaluated by his bereaved family, and leads to better bereavement outcomes. Death preparedness also limits futile EOL care and facilitates patients to receive EOL care in consistence with their preferences. However, death preparedness has never been evaluated for terminally ill cancer patients and their family caregivers in Taiwan. Furthermore, the findings of death preparedness from the existing studies were predominantly based on cross-sectional, retrospective evaluations of perceptions of death preparedness by a single question, which could raise concerns about the validity of the instrument to evaluate a multidimensional construct. Finally, predictors of death preparedness have never been comprehensively evaluated from demographics, patient disease burden, social support, prognostic awareness, physician communication with patients/family caregivers, and caregiving burden. Therefore, the specific aims of this prospective, longitudinal study are to (1) describe the course of changes in death preparedness for terminally ill cancer patients and their family caregivers over the patient’s dying process, (2) evaluate the impact of death preparedness on psychological distress (anxiety and depression), QOL, and preferences for EOL care over the dying process for terminally ill cancer patients and their family caregivers, actual EOL care received by terminally ill cancer patients before death, quality of death and the dying process as evaluated by bereaved family caregivers, and bereavement outcomes (depression and complicated grief) for caregivers, and (3) identify factors that influence death preparedness for terminally ill cancer patients and family caregivers comprehensively from demographics, patient disease burden, social support, prognostic awareness, physician communication with patients and family caregivers, and caregiving burden. A prospective, longitudinal study will be conducted over three years on a convenience sample of 290 dyads of terminally ill cancer patients and their primary family caregivers. Well-established instruments or questions from well-known published studies will be used to measure death preparedness (Preparation for EndofLife subscale of the Quality of Life at the End of Life scale), identified outcome variables, and potential predictors of death preparedness. For patients, assessments will be performed prospectively at a monthly schedule and will continue until the patient’s death, loss to follow-up, study withdrawal, or when the patient can no longer be interviewed. Family caregivers will be continually followed up monthly through the 1st, 3rd, 6th, and13th month post-bereavement unless they refuse to further participate. Multivariate logistic regression models with the generalized estimating equation (GEE) will be conducted to (1) examine the trajectory of changes in death preparedness over the dying process, (2) impact of perceived death preparedness on the preferences of EOL care, and actual EOL care received by patients, and (3) identify factors that influence death preparedness from demographics, patient disease burden, social support, prognostic awareness, physician communication with patients and family caregivers, and caregiving burden. Multiple linear regression models with the GEE will be used to examine the impact of perceived death preparedness on QOL, anxiety and depressive symptoms, quality of death and dying, and bereavement grief with appropriately controlling for confounders (i.e., age, symptom distress, functional dependency, and caregiving burden). Given that EOL care has become increasingly aggressive for Taiwanese cancer patients and that the Taiwanese national healthcare system has become increasingly unsustainable for the accelerating health expenditures at EOL, better understanding of how prepared terminally ill cancer patients and their family caregivers are for the forthcoming death and what factors will facilitate their death preparedness is urgently needed. Findings gathering from such investigations may provide insights for designing interventions that can facilitate death preparedness among dying patients and family caregivers to avoid aggressive, expensive, but maybe futile EOL care and subsequent physical suffering, psychological distress, and financial burdens derived from such EOL care, improve the quality of dying and death, increase the likelihood of a good death for terminally ill cancer patients, and promote successful bereavement adjustment for family caregivers.

Project ID:PC10601-0229
External Project ID:MOST104-2314-B182-027-MY3