Factors Predicting Bereaved Caregiver Perception of Quality of Care in the Final Week of Life: Implications for Health Care Providers

Abstract

Background: Cancer caregivers are key stakeholders in the final weeks of life and in bereavement. Research has highlighted end-of-life (EOL) factors important to caregivers, as well as factors contributing to caregiver mental health and bereavement outcomes. There has been limited data on factors predicting caregiver perceptions of quality of EOL care. Objective: This study's purpose was to identify modifiable predictors of caregivers' Caregiver Evaluation of Quality of End of Life Care (CEQUEL) scores, with the broader aim of informing clinical interventions to improve caregiver impressions of care and subsequent bereavement adjustment. Methods: Study data came from Coping with Cancer I (CwC1). CwC1 investigators interviewed advanced cancer patients and caregivers prior to the patient's death (Wave 1) and reinterviewed caregivers following the death (Wave 2) (N = 275 dyads). The authors identified potential Wave 1 predictors of CEQUEL scores and performed a series of linear regression analyses to identify a parsimonious predictive model using corrected Akaike's Information Criterion (AICc) values. Results: In adjusted analyses, caregivers rated quality of care as poorer when patients died in a hospital (B = -1.40, SE = 0.40, p = 0.001) (B, unstandardized regression coefficient; SE, standard error) or had less than one week of inpatient hospice care (B = -1.98, SE = -0.70, p = 0.006). Whole-person physician care and caregiver religiosity were associated with perceived higher quality of care in unadjusted, but not adjusted, analyses. Conclusions: Findings suggest that place of death and hospice length of stay best predict bereaved caregiver evaluations of quality of EOL care. These findings equip health care providers with modifiable targets to improve caregivers' experience of EOL care and subsequent bereavement.

Cancer patients hospitalised in the last week of life risk insufficient care quality – a population-based study from the Swedish Register of Palliative Care

“…Furthermore, bereavement support was infrequently offered to the family after a hospital cancer death. Hence, our findings, although indirect by means of a proxy questionnaire, substantiate previous reports of poorer quality of care when cancer patients die in hospitals [9][10][11][12]. Symptoms may develop rapidly in the last phase of life.…”

A National Profile Of End-Of-Life Caregiving In The United States

“…4,16 Large-scale surveys on caregiving do not exclusively focus on EOL caregiving. Therefore, knowledge of EOL caregiving has generally been limited to specific disease groups or care settings, 12,17,18 or to selected subpopulations identified as actively dying. 19,20 Moreover, reliance on reports of caregiving experiences obtained after the assisted person’s death has made many studies subject to recall bias.…”

Family Caregiver Depressive Symptom and Grief Outcomes From the ENABLE III Randomized Controlled Trial

“…Examples include use of hospice, 2,12,35 avoidance of high intensity end-of-life care, 36,37 care recipient's quality of death and dying, 36 and the leveraging of social support networks. 3,38 These factors represent prospective mediators of early palliative care support for caregivers that impact after-death outcomes.…”