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 6–8 weeks 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.publishedVersio

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BackgroundThe ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.Methods194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.ResultsOf the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.ConclusionsOur findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping

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

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

The European Association for Palliative Care basic dataset to describe a palliative care cancer population:Results from an international Delphi process

Background: One of the barriers identified in palliative care research is the lack of common criteria to describe the population. Aim: The aim of this Delphi process was to obtain consensus on a basic set of core variables to describe or classify a palliative care cancer population. Design and setting: This was a five-step international Delphi exercise. A total of 117 experts were invited to participate. Based on a literature review and analyses of existing minimum datasets for national databases, a list of 18 proposed variables was presented in the first Delphi round. The two first rounds focused on which variables to include, and several new variables were proposed. The three last Delphi rounds focused on how the agreed variables should be recorded. Consensus was defined as at least 70% agreement. Results: A total of 64 experts from 30 countries participated. High consensus was reached on 31 variables, divided between a ‘patient form’ – date of birth, gender, living situation, education, ethnicity and 12 symptoms – and a ‘health-care personnel form’ – patient’s date of birth, principal diagnosis, date of the principal diagnosis, stage of the cancer disease, site of metastases, present anticancer treatment, main additional diagnoses, stage of the additional diagnoses, medication, weight loss, performance status, cognitive impairment, place of care and provision of care. It was more difficult to agree upon how to record the variables, but consensus was reached on all except ethnicity, vomiting and weight loss. Conclusion: Consensus was reached on a set of core variables and how they should be recorde

David Lichine as The Immortal Kostchei (left at front), and artists of the company, in L'oiseau de feu, Original Ballet Russe, Australian tour, His Majesty's Theatre, Melbourne, April 1940 [picture] /

Part of the collection: Hugh P. Hall collection of photographs, 1938-1940.; From: L'oiseau de feu (The fire bird) : ballet in two scenes / by Michel Fokine, drawn from Russian folk tales, music by Igor Stravinsky.; Inscription: "4H/36".; Choreography by Michel Fokine ; scenery and costumes by Nathalie Gontcharova.; Also available in an electronic version via the Internet at: http://nla.gov.au/nla.pic-vn3995909. One of a collection of photographs taken by Hugh P. Hall of 28 ballet productions performed by the Covent Garden Russian Ballet (toured Australia 1938-1939) and the Original Ballet Russe (toured Australia 1939-1940). These are the second and third of the three Ballets Russes companies which toured Australasia between 1936 and 1940. The photographs were taken from the auditorium during a live performance in His Majesty's Theatre, Melbourne and mounted on cardboard for display purposes. For conservation and storage, the photographs have been demounted. The original arrangement of the photographs has been recorded, and details are available from the Pictures Branch of the National Library

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 6–8 weeks 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