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Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved. [ABSTRACT FROM AUTHOR]

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster‐randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post‐ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice. [ABSTRACT FROM AUTHOR]

Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

The prospect of death influences people’s thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients’ thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries. [ABSTRACT FROM AUTHOR]