IntroductionAdequately 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 analysisThe 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 disseminationThe 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 numberNCT04271085.

SammendragBackground: The COVID 19-pandemic impacted on the care of seriously ill patients both with and without COVID 19. We anticipated that the pandemic and lockdown of Norway would also affect the holistic care of the dying and their family members.Objective: To gain insight into how family members experienced both end-of-life care for a close relative and support for themselves during the first phase of the COVID 19 pandemic in Norway.Method: Family members who had lost a close relative completed an open, online questionnaire that was available from July to October 2020. The form was answered anonymously by 102 bereaved persons. The questionnaire was based on CODE Care of the Dying Evaluation), with additional questions linked to the pandemic and an option to add free-text comments. Quantitative data were analysed using descriptive statistics, and free-text comments were analysed thematically in five steps.Results: A total of 83 per cent of the family members were women, median age group 50 59 years, and 61 per cent had lost a parent. Of the deceased, 46 per cent were women, 75 per cent were 70 years, 48 per cent had cancer and 24 per cent had dementia. A total of 83 per cent died between March and June. Sixteen per cent died at home while 33 per cent died in hospital and 40 per cent died in a nursing home. Most of the family members 85 per cent) were of the opinion that the patient had received satisfactory treatment and nursing care while 35 per cent felt that they themselves had not received adequate support during the patient's final days. Four themes stood out in the free-text comments: 'A safe and dignified end to the journey' describes the good care and individualised approach that many experienced despite the pandemic and lockdown. 'It was all about coronavirus measures' includes experiences of poor availability and quality of treatment and nursing care, inadequate follow-up of family members and a lack of information or confusing information. 'Loss of contact and closeness' deals with the experiences and consequences of visiting bans, visiting restrictions and infection control measures. 'We never heard anything afterwards' describes the lack of contact after the death. Conclusion:Family members largely considered the nursing care and symptom relief to be good. However, the lack of communication, strict visiting restrictions and alienating personal protective equipment led to feelings of uncertainty and a sense of loss and frustration during both the patient's final days and afterwards.'The visiting restrictions meant that we were unable to keep up with the development of the illness and her general condition. She certainly became weaker and weaker, but for us the end came abruptly. The nursing staff probably wouldn't see the decline in the same way as those of us who knew her would have done.' Participant no. 93, municipal institution) Conflicts arose because the staff were uncertain how to apply the visiting rules. The participants found it stressful to have to 'take it into their own hands' to ga...

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for relevance and quality assured these by means of the COSMIN-checklist. We performed a best evidence synthesis to summarise the measurement properties of each included PROM.Results: We screened 1948 references for relevance, and included 15 studies evaluating the measurement properties of four different PROMs: CDS, DMQ, SRI and a respiratory symptom checklist. None of the included instruments were validated directly for use in a palliative setting, but they generally showed promising measurement properties in other relevant settings. We still lack data on important measurement properties for all the available instruments, and currently, only SRI seems to be available in a Norwegian validated version. Further research is therefore needed to translate and validate the PROMs for use in palliative care in Norway.