Goldraij, G. (Gabriel)
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- Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey(BMJ, 2023) Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Kvikstad, A. (Anne); Sigurdardottir, K. (Katrin); Hjorth, N.E. (Nina Elisabeth); Goldraij, G. (Gabriel); Hufthammer, K.O. (Karl Ove)Objectives Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods Relatives after cancer deaths in hospitals answered the CODE questionnaire 6– 8weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68%women, age 18–80+). Fifty- six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions Relatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.
- Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries(Wiley Periodicals LLC, 2021) Mayland, C.R. (Catriona Rachel); Gerlach, C. (Christina); Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Weber, M. (Martin); Leppert, W. (Wojciech); Wolszczak, K. (Katarzyna); Passarini, J.N. (Juliana Nalin); Zambon, L. (Lair); García-Yanneo, E. (Eduardo); Saad, I.B. (Ivete Bredda); Sigurdardottir, K. (Katrin); Ellershaw, J. (John); Goldraij, G. (Gabriel); Hufthammer, K.O. (Karl Ove); Tuen-Hansen, M.I. (Marit Irene)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. A postbereavement survey was conducted 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 inter- national version of the Care Of the Dying Evaluation (i- CODE) questionnaire 6–8 weeks postbereavement. Pri- mary 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 patient’s last days of life. Results. Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their fam- ily member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of 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% of 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 dying cancer patients 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. (ClinicalTrials.gov Identifier: NCT03566732).
- Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre- testing survey methods across seven countries to develop an international outcome measure(Sage Journals, 2019) Mayland, C.R. (Catriona Rachel); Gerlach, C. (Christina); Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Weber, M. (Martin); Leppert, W. (Wojciech); Passarini, J.N. (Juliana Nalin); Zambon, L. (Lair); Stachowiak, A. (Andrzej); García-Yanneo, E. (Eduardo); Saad, I.B. (Ivete Bredda); Sigurdardottir, K. (Katrin); Ellershaw, J. (John); Goldraij, G. (Gabriel); Krajewska, M. (Maria ); Tuen-Hansen, M.I. (Marit Irene)Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.