Patients’ and relatives’ perspectives on the quality of end-of-Life care in advanced cancer: From the final months to bereavement

Abstract

Background End-of-life care affects both patients with advanced cancer and their relatives but is often assessed from only one perspective, namely that of bereaved relatives. This study aimed to gain insight into the quality of care as experienced by patients with advanced cancer and their relatives. Methods A total of 367 patients with stage IV cancer, 242 relatives and 163 bereaved relatives were included from a large prospective, longitudinal study (eQuiPe), which ran from November 2017 until March 2020. Patients and their relatives completed a questionnaire during the last 3 months of the patient’s life. Bereaved relatives completed a questionnaire within six months after the patient’s death. Results At the end of life, patients reported a mean satisfaction with care score of 72/100 (SD 21), and relatives a mean score of 59/100 (SD 28) for the care they received themselves. Continuity with care, the extent to which the care received from different healthcare professionals was coordinated, was associated with higher satisfaction with care in patients (β 2.1, 95% CI 1.6–2.6). Bereaved relatives reported that most patients died peacefully (87%) and at home (73%). Most bereaved relatives (66%) were contacted by a healthcare professional after the patient’s death, but over half were not informed about grief (52%) or the available options for bereavement support (58%), with about 20% reporting they would have appreciated this. Conclusions Quality of end-of-life care was generally perceived as good. This study highlights the importance of good continuity of care as it is associated with higher satisfaction with care in patients. Also, one-fifth of the bereaved relatives reported that they had not been informed about bereavement care despite desiring it, which emphasizes the need for better care for relatives before and after the patient’s death.