Project Details
Abstract
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 IDs
Project ID:PC10501-2033
External Project ID:MOST104-2314-B182-027-MY3
External Project ID:MOST104-2314-B182-027-MY3
Status | Finished |
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Effective start/end date | 01/08/16 → 31/07/17 |
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