Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

Abstract

Background. Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods. Postbereavement survey by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patients' last days of life. Results. From 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate 54%).Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion. This is the first study assessing quality of care for patients dying from cancer from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. Clinical trial information: NCT03566732 The Oncologist ;9999:• •

Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic

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Factors associated with higher levels of grief and support needs among people bereaved during the pandemic: Results from a national online survey

“…We assessed whether demographic and clinical factors, experiences of end-of-life care and pandemic-related problems independently predicted levels of grief and support needs. Factors included in the analysis are recognised risk factors for poor bereavement outcomes (age, gender, relationship to deceased, expectedness of the death, ability to say goodbye to the deceased, experiences of end-of-life care, perceived social support) (Kentish-Barnes et al ., 2015, Lobb et al ., 2010, Selman et al ., 2020, Yamaguchi et al ., 2017) or have been identified to be indirectly associated with such outcomes (qualifications, deprivation level and region; place of death; cause of death) (Haugen et al ., 2021, Miyashita et al ., 2008). We used postcode data to identify geographical region of residence and (for England) socio-economic deprivation.…”

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey

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