Evolution of Quality of End-Of-Life Care of Terminally Ill Cancer Patients and Its Impact on Caregivers’ Adjustment over the First Year of Bereavement.

Improving the quality of end-of-life (EOL) care for terminally ill cancer patients is a priority in worldwide health care systems. However, measuring patient-perceived quality of EOL care is difficult as death approaches. Relying on surrogate respondents to after-death evaluate the quality of EOL care is highly recommended. Evidence showed that bereaved caregivers’ evaluation of the quality of EOL care is poor and family-perceived quality of EOL care impact on bereaved caregivers’ psychological well-beings and quality of life (QOL). However, several gaps existed in this knowledge. Family-perceived quality of EOL care and its impacts on care giving and bereavement outcomes have never been evaluated in Taiwan and no studies comprehensively investigate predictors of family-perceived quality of EOL care. All studies that explored family-perceived quality of EOL care were evaluated retrospectively with a considerable variation in the time elapsed when assessments were made, there by potentially introducing recall biases. All studies measured quality of EOL care and bereavement adjustments at the same time. Family-perceived quality of EOL care may be colored by their grief reactions and vice versa. Finally, all studies assessed family-perceived EOL-care quality and their bereavement adjustments only once, which cannot catch the changes of family-perceived quality of EOL care and its longitudinal impact on caregivers’ psychological distress and QOL. Therefore, the specific aims of this 3-year prospective, longitudinal study are to (1) explore the family-perceived quality of EOL care over terminally ill cancer patients’dying process, (2) identify predictors of family-perceived quality of EOL care, and (3) examine the impacts of family-perceived quality of EOL care on their psychological adjustments and QOL both while providing EOL care giving and over the first year of bereavement. A convenience sample of 360 family caregivers of terminally ill cancer patients will be recruited. Family-perceived quality of EOL care, patients’ symptom distress and functional dependency, and families’ QOL and depressive symptoms will be measured by well-trained, experienced oncology nurses using well-established instruments till the patient’s death. Bereaved family members will be interviewed at 1, 3, 6, and 13 months after patient death. Longitudinal changes of QODD scores over the patient’s dying process (Aim 1) will be analyzed by generalized estimating equation. Multivariate hierarchical linear modeling will be used to identify predictors of family-perceived EOL-care quality simultaneously across the 6 specific domains of QODD(Aim 2).Multiple linear regression models with MHLM will be used to longitudinally examine the impact of family-perceived quality of EOL care simultaneously on their depressive symptoms and QOL both while providing EOL care giving and over the first year of bereavement (Aim 3). For the likelihood of experiencing prolonged grief, a multivariate logistic regression model with hierarchical linear modeling (HLM)will be conducted. Our findings may highlight directions for clinical interventions to improve quality of EOL-care, avoid futile life-sustaining treatments that patients and families may not prefer, counteract escalating EOL-care expenditures, and facilitate bereavement adjustment by meeting the unique needs of bereaved family members and by improving their QOL to benefit both bereaved family members of cancer patients and Taiwanese society at large.

Project ID:PC10901-1971
External Project ID:MOST108-2314-B182-061-MY3