Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085

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

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

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

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

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

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)

Live well, die well - an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying