Terminal cancer patients’ and their primary caregivers’ attitudes toward hospice/palliative care and their effects on actual utilization: A prospective cohort study

Abstract

Background: Previous studies on hospice/palliative care indicated that patients’ socio-demographic factors, disease status, and availability of health-care resources were associated with hospice/palliative care utilization. However, the impact of family caregivers on hospice/palliative care utilization has not been thoroughly investigated. Aim: To evaluate the association between attitudes toward hospice/palliative care of both patients with terminal cancer (defined as progressive, advanced cancer in which the patient will die within months) and their family caregivers and utilization of inpatient hospice/palliative care facilities. Design: A prospective observational cohort study was performed in 12 hospitals in South Korea. Attitude toward hospice/palliative care was assessed immediately after terminal cancer diagnosis. After the patient’s death, caregivers were interviewed whether they utilized hospice/palliative care facilities. Participants: A total of 359 patient–caregiver dyads completed baseline questionnaires. After the patients’ death, 257 caregivers were interviewed. Results: At the baseline questionnaire, 137/359 (38.2%) patients and 185/359 (51.5%) of caregivers preferred hospice/palliative care. Preference for hospice/palliative care was associated with awareness of terminal status among both patients (adjusted odds ratio: 1.87, 95% confidence interval: 1.16–3.03) and caregivers (adjusted odds ratio: 2.14, 95% confidence interval: 1.20–3.81). Religion, metastasis, and poor performance status were also independently associated with patient preference for hospice/palliative care. At the post-bereavement interview, 104/257 (40.5%) caregivers responded that they utilized hospice/palliative care facilities. Caregiver’s preferences for hospice/palliative care were significantly associated with actual utilization (adjusted odds ratio: 2.67, 95% confidence interval: 1.53–4.67). No patient-related factors were associated with hospice/palliative care utilization. Conclusion: Promoting awareness of prognosis and to improve communication between doctors and families is important for facilitating the use of hospice/palliative care.