Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home. This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles. Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support. As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying.

This article contributes to a growing literature that takes a more nuanced approach to exploring the complexities of relationships and negotiations with gatekeepers. Using our study of young people living with a parent at the end of life as a ‘critical case’ of sensitive qualitative research, we discuss how far from being a smooth, linear process, participant recruitment was experienced as a series of overlapping challenges, characterised here as ‘wheels within wheels’. Each component of this multi-faceted process relied on identifying and engaging with key practitioners who acted as gatekeepers. We discuss how researcher and gatekeeper positionality influenced the outcome of negotiations with gatekeepers, and highlight potential implications for young people in exigent sets of circumstances. If the routes ‘in’ to access young people are difficult, then this also raises questions about routes ‘out’ for young people and their access to support when living through challenging times.

Home has become established as the preferred place of death within health policy and practice in the UK and internationally. However, growing awareness of the structured inequalities underpinning end-of-life care and the challenges for family members undertaking care at home raise questions about the nature of patient and public preferences and priorities regarding place of death and the feasibility of home management of the complex care needs at the end-of-life. This paper presents findings from a qualitative study of 12 patients' and 34 bereaved family caregivers' perspectives and priorities regarding place of death. Participants expressed complex and nuanced accounts in which place of death was not afforded an overarching priority. The study findings point to public pragmatism and flexibility in relation to place of death, and the misalignment of current policy with public priorities that are predominantly for comfort and companionship at the end-of-life, regardless of place.

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.