Haugen, D., Hufthammer, K.O., Gerlach, C. et al. (15 more authors) (2021) Good quality care for patients with cancer dying in hospitals, but information needs not met : bereaved relatives’ survey within seven countries. The Oncologist, 26 (7). e1273-e1284. ISSN 1083-7159
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
Implications for Practice
Previous studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2021 The Authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | Bereaved relatives; Palliative care; Proxy; Quality of health care; Survey and questionnaire; Terminal care |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Sheffield Teaching Hospitals |
Funding Information: | Funder Grant number Yorkshire Cancer Research STA112 |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 10 Jun 2021 08:02 |
Last Modified: | 07 Mar 2022 14:18 |
Status: | Published |
Publisher: | Wiley |
Refereed: | Yes |
Identification Number: | 10.1002/onco.13837 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:175080 |